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"content": "\u003cp>Two years ago, former President Barack Obama announced the \u003ca href=\"https://obamawhitehouse.archives.gov/precision-medicine\">Precision Medicine initiative\u003c/a> in his State of the Union Address. The initiative aspired to a “new era of medicine” where disease treatments could be specifically tailored to each patient’s genetic code.\u003c/p>\n\u003cp>This resonated soundly in cancer medicine. Patients can already manage their cancer with therapies that target the specific genes that are altered in their particular tumor. For example, women with a type of breast cancer caused by the amplification of gene HER2 are often treated with a therapeutic called herceptin. Because these targeted therapeutics are specific to cancer cells, they tend to have fewer side effects than traditional cancer treatments with chemotherapy or radiation.\u003c/p>\n\u003cp>However, such treatments are not available for most cancer patients. In many cancers, the specific genetic alterations that are responsible for a cancer remain unknown. To create individualized cancer treatments, we must know more about the functional genetic alterations.\u003c/p>\n\u003cp>With data on cancer genetics growing rapidly, mathematics and statistics can now help unlock the hidden patterns in this data to find the genes that are responsible for an individual’s cancer. With this knowledge, physicians can select appropriate treatments that block the action of these genes to personalize therapies for individual patients. My research aims to improve precision medicine in cancer – by building on the same methods that have been used to find patterns in Netflix movie ratings.\u003c/p>\n\u003cp>\u003cstrong>Sifting Through the Data\u003c/strong>\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Today, there is unprecedented public access to cancer genetics data. These data come from generous patients who donate their tumor samples for research. Scientists then apply sequencing technologies to measure the mutations and activity in each of the 20,000 genes in the human genome.\u003c/p>\n\u003cp>All these data are a direct result of the \u003ca href=\"http://www.nature.com/nature/journal/v431/n7011/full/nature03001.html\">Human Genome Project\u003c/a> in 2003. That project determined the sequence for all the genes that make up healthy human DNA. Since the completion of that project, the cost of sequencing the human genome has \u003ca href=\"http://www.nature.com/news/technology-the-1-000-genome-1.14901\">more than halved every year\u003c/a>, surpassing the growth of computing power described in \u003ca href=\"https://theconversation.com/moores-law-is-50-years-old-but-will-it-continue-44511\">Moore’s Law\u003c/a>. This cost reduction enables researches to collect unprecedented genetics data from cancer patients.\u003c/p>\n\u003cp>Most scientific studies on cancer genetics performed worldwide release their data to a centralized, public database provided by the U.S. National Institutes of Health (NIH) National Library of Medicine. The NIH National Cancer Institute and National Human Genome Research Institute have also freely released genetic data from over 11,000 tumors in 33 cancer types through a project called \u003ca href=\"https://cancergenome.nih.gov/\">The Cancer Genome Atlas.\u003c/a>\u003c/p>\n\u003cp>Every biological function – from extracting energy from food to healing a wound – results from activity in different combinations of genes. Cancers hijack the genes that enable people to grow to adulthood and that protect the body from the immune system. Researchers dub these the \u003ca href=\"http://www.cell.com/abstract/S0092-8674(11)00127-9\">“hallmarks of cancer.”\u003c/a> This so-called gene dysregulation enables a tumor to grow uncontrollably and form metastases in distant organs from the original tumor site.\u003c/p>\n\u003cp>Researchers are actively using these public data to find the set of gene alterations that are responsible for each tumor type. But this problem is not as simple is identifying a single dysregulated gene in each tumor. Hundreds, if not thousands, of the 20,000 genes in the human genome are dysregulated in cancer. The group of dysregulated genes varies in each patient’s tumor, with smaller sets of commonly reused genes enabling each cancer hallmark.\u003c/p>\n\u003cp>Precision medicine relies on finding the smaller groups of dysregulated genes that are responsible for biological function in each patient’s tumor. But, genes may have multiple biological functions in different contexts. Therefore, researchers must uncover a set of “overlapping” genes that have common functions in a set of cancer patients.\u003c/p>\n\u003cp>Linking gene status to function requires complex mathematics\u003cbr>\nand immense computing power. This knowledge is essential to predict of outcome to therapies that would block the function of these genes. So, how can we uncover those overlapping features to predict individual outcomes for patients?\u003c/p>\n\u003cp>\u003cstrong>What Netflix Can Teach Us\u003c/strong>\u003c/p>\n\u003cp>Fortunately for us, this problem has already been solved in computer science. The answer is a class of techniques called “matrix factorization” – and you’ve likely already interacted with these techniques in your everyday life.\u003c/p>\n\u003cp>In 2009, \u003ca href=\"http://www.netflixprize.com/index.html\">Netflix held ahow challenge\u003c/a> to personalize movie ratings for each Netflix user. On Netflix, each user has a distinct set of ratings of different movies. While two users may have similar tastes in movies, they may vary wildly in specific genres. Therefore, you cannot rely on comparing ratings from similar users.\u003c/p>\n\u003cp>Instead, a matrix factorization algorithm finds movies with similar ratings among a smaller group of users. The group of users will vary for each movie. The computer associates each user with a group of movies to a different extent, based upon their individual tastes. The relationships among users are referred to as “patterns.” These patterns are learned from the data, and may find common rankings unforeseen by movie genre alone – for example, users may share a preference for a particular director or actor.\u003c/p>\n\u003cfigure class=\"align-center zoomable\">\u003ca href=\"https://cdn.theconversation.com/files/164115/area14mp/image-20170405-20472-c764c6.png\">\u003cimg src=\"https://cdn.theconversation.com/files/164115/width754/image-20170405-20472-c764c6.png\" alt=\"\">\u003c/a>\u003cfigcaption>\u003cspan class=\"attribution\">\u003cspan class=\"source\">Genevieve Stein-O'Brien\u003c/span>, \u003ca class=\"license\" href=\"http://creativecommons.org/licenses/by/4.0/\">CC BY\u003c/a>\u003c/span>\u003c/figcaption>\u003c/figure>\n\u003cp>The same process can work in cancer. In this case, the measurements of gene dysregulation are analogous to movie ratings, movie genres to biological function and users to patients’ tumors. The computer searches across patient tumors to find patterns in gene dysregulation that cause the malignant biological function in each tumor.\u003c/p>\n\u003cp>\u003cstrong>From Movies to Tumors\u003c/strong>\u003c/p>\n\u003cp>The analogy between movie ratings and cancer genetics breaks down in the details. Unless they are minors, Netflix users are not constrained in the movies they watch. But, our bodies instead prefer to minimize the number of genes used for any single function. There are also substantial redundancies between genes. To protect a cell, one gene may easily substitute for another to serve a common function. Gene functions in cancer are even more complex. Tumors are also highly complex and rapidly evolving, depending upon random interactions between the cancer cells and the adjacent healthy organ.\u003c/p>\n\u003cp>To account for these complexities, we have developed a matrix factorization approach called \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/20810601\">Coordinated Gene Activity in Pattern Sets – or CoGAPS for short\u003c/a>. Our algorithm accounts for biology’s minimalism by incorporating as few genes as possible into the patterns for each tumor.\u003c/p>\n\u003cp>Different genes can also substitute for one another, each serving a similar function in a different context. To account for this, CoGAPS simultaneously estimates a statistic for the so-called “patterns” of gene function. This allows us to compute the probability of each gene being used in each biological function in a tumor.\u003c/p>\n\u003cp>For example, many patients take a targeted therapeutic called cetuximab to prolong survival in colorectal, pancreatic, lung and oral cancers. Our recent work found that these patterns can distinguish gene function in cancer cells that respond to the targeted therapeutic agent cetuximab from those that do not.\u003c/p>\n\u003cp>\u003cstrong>The Future\u003c/strong>\u003c/p>\n\u003cp>Unfortunately, cancer therapies that target genes usually cannot cure a patient’s disease. They can only delay progression for a few years. Most patients then relapse, with tumors that are no longer responsive to the treatment.\u003c/p>\n\u003cp>\u003ca href=\"http://www.impactjournals.com/oncotarget/index.php?journal=oncotarget&page=article&op=view&path%5B%5D=12075\">Our own recent work\u003c/a> found that the patterns that distinguish gene function in cells that are responsive to cetuximab include the very genes that give rise to resistance. Emerging immunotherapies are promising and appear to cure some cancers. Yet, far too often, patients with these treatments also relapse. New data that track the cancer genetics after treatment is essential to determine why patients no longer respond.\u003c/p>\n\u003cp>Along with these data, cancer biology also requires a new generation of scientists who can bridge mathematics and statistics to determine the genetic changes occurring over time in drug resistance. In other fields of mathematics, computer programs are able to forecast long-term outcomes. These models are used commonly in weather prediction and investment strategies.\u003c/p>\n\u003cp>In these fields and \u003ca href=\"http://journals.ametsoc.org/doi/abs/10.1175/2010MWR3515.1\">my own previous research\u003c/a>, we have found that updates to the models from large datasets – such as satellite data in the case of weather – improve long-term forecasts. We have all seen the effect of these updates, with weather predictions improving the closer that we are to a storm.\u003c/p>\n\u003cp>\u003cimg src=\"https://counter.theconversation.edu.au/content/74806/count.gif?distributor=republish-lightbox-basic\" alt=\"The Conversation\" width=\"1\" height=\"1\">Just as tools from computer science used can be adapted to both movie recommendations and cancer, the future generation of computational scientists will adopt prediction tools from an array of fields for precision medicine. Ultimately, with these computational tools, we hope to predict tumors’ response to therapy as commonly as we predict the weather, and perhaps more reliably.\u003c/p>\n\u003cp>\u003cem>\u003ca href=\"https://theconversation.com/profiles/elana-fertig-347632\">Elana Fertig\u003c/a>, Assistant Professor of Oncology Biostatistics and Bioinformatics, \u003cem>\u003ca href=\"http://theconversation.com/institutions/johns-hopkins-university-1256\">Johns Hopkins University\u003c/a>\u003c/em>\u003c/em>\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>This article was originally published on \u003ca href=\"http://theconversation.com\">The Conversation\u003c/a>. Read the \u003ca href=\"https://theconversation.com/what-netflix-can-teach-us-about-treating-cancer-74806\">original article\u003c/a>.\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Two years ago, former President Barack Obama announced the \u003ca href=\"https://obamawhitehouse.archives.gov/precision-medicine\">Precision Medicine initiative\u003c/a> in his State of the Union Address. The initiative aspired to a “new era of medicine” where disease treatments could be specifically tailored to each patient’s genetic code.\u003c/p>\n\u003cp>This resonated soundly in cancer medicine. Patients can already manage their cancer with therapies that target the specific genes that are altered in their particular tumor. For example, women with a type of breast cancer caused by the amplification of gene HER2 are often treated with a therapeutic called herceptin. Because these targeted therapeutics are specific to cancer cells, they tend to have fewer side effects than traditional cancer treatments with chemotherapy or radiation.\u003c/p>\n\u003cp>However, such treatments are not available for most cancer patients. In many cancers, the specific genetic alterations that are responsible for a cancer remain unknown. To create individualized cancer treatments, we must know more about the functional genetic alterations.\u003c/p>\n\u003cp>With data on cancer genetics growing rapidly, mathematics and statistics can now help unlock the hidden patterns in this data to find the genes that are responsible for an individual’s cancer. With this knowledge, physicians can select appropriate treatments that block the action of these genes to personalize therapies for individual patients. My research aims to improve precision medicine in cancer – by building on the same methods that have been used to find patterns in Netflix movie ratings.\u003c/p>\n\u003cp>\u003cstrong>Sifting Through the Data\u003c/strong>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Today, there is unprecedented public access to cancer genetics data. These data come from generous patients who donate their tumor samples for research. Scientists then apply sequencing technologies to measure the mutations and activity in each of the 20,000 genes in the human genome.\u003c/p>\n\u003cp>All these data are a direct result of the \u003ca href=\"http://www.nature.com/nature/journal/v431/n7011/full/nature03001.html\">Human Genome Project\u003c/a> in 2003. That project determined the sequence for all the genes that make up healthy human DNA. Since the completion of that project, the cost of sequencing the human genome has \u003ca href=\"http://www.nature.com/news/technology-the-1-000-genome-1.14901\">more than halved every year\u003c/a>, surpassing the growth of computing power described in \u003ca href=\"https://theconversation.com/moores-law-is-50-years-old-but-will-it-continue-44511\">Moore’s Law\u003c/a>. This cost reduction enables researches to collect unprecedented genetics data from cancer patients.\u003c/p>\n\u003cp>Most scientific studies on cancer genetics performed worldwide release their data to a centralized, public database provided by the U.S. National Institutes of Health (NIH) National Library of Medicine. The NIH National Cancer Institute and National Human Genome Research Institute have also freely released genetic data from over 11,000 tumors in 33 cancer types through a project called \u003ca href=\"https://cancergenome.nih.gov/\">The Cancer Genome Atlas.\u003c/a>\u003c/p>\n\u003cp>Every biological function – from extracting energy from food to healing a wound – results from activity in different combinations of genes. Cancers hijack the genes that enable people to grow to adulthood and that protect the body from the immune system. Researchers dub these the \u003ca href=\"http://www.cell.com/abstract/S0092-8674(11)00127-9\">“hallmarks of cancer.”\u003c/a> This so-called gene dysregulation enables a tumor to grow uncontrollably and form metastases in distant organs from the original tumor site.\u003c/p>\n\u003cp>Researchers are actively using these public data to find the set of gene alterations that are responsible for each tumor type. But this problem is not as simple is identifying a single dysregulated gene in each tumor. Hundreds, if not thousands, of the 20,000 genes in the human genome are dysregulated in cancer. The group of dysregulated genes varies in each patient’s tumor, with smaller sets of commonly reused genes enabling each cancer hallmark.\u003c/p>\n\u003cp>Precision medicine relies on finding the smaller groups of dysregulated genes that are responsible for biological function in each patient’s tumor. But, genes may have multiple biological functions in different contexts. Therefore, researchers must uncover a set of “overlapping” genes that have common functions in a set of cancer patients.\u003c/p>\n\u003cp>Linking gene status to function requires complex mathematics\u003cbr>\nand immense computing power. This knowledge is essential to predict of outcome to therapies that would block the function of these genes. So, how can we uncover those overlapping features to predict individual outcomes for patients?\u003c/p>\n\u003cp>\u003cstrong>What Netflix Can Teach Us\u003c/strong>\u003c/p>\n\u003cp>Fortunately for us, this problem has already been solved in computer science. The answer is a class of techniques called “matrix factorization” – and you’ve likely already interacted with these techniques in your everyday life.\u003c/p>\n\u003cp>In 2009, \u003ca href=\"http://www.netflixprize.com/index.html\">Netflix held ahow challenge\u003c/a> to personalize movie ratings for each Netflix user. On Netflix, each user has a distinct set of ratings of different movies. While two users may have similar tastes in movies, they may vary wildly in specific genres. Therefore, you cannot rely on comparing ratings from similar users.\u003c/p>\n\u003cp>Instead, a matrix factorization algorithm finds movies with similar ratings among a smaller group of users. The group of users will vary for each movie. The computer associates each user with a group of movies to a different extent, based upon their individual tastes. The relationships among users are referred to as “patterns.” These patterns are learned from the data, and may find common rankings unforeseen by movie genre alone – for example, users may share a preference for a particular director or actor.\u003c/p>\n\u003cfigure class=\"align-center zoomable\">\u003ca href=\"https://cdn.theconversation.com/files/164115/area14mp/image-20170405-20472-c764c6.png\">\u003cimg src=\"https://cdn.theconversation.com/files/164115/width754/image-20170405-20472-c764c6.png\" alt=\"\">\u003c/a>\u003cfigcaption>\u003cspan class=\"attribution\">\u003cspan class=\"source\">Genevieve Stein-O'Brien\u003c/span>, \u003ca class=\"license\" href=\"http://creativecommons.org/licenses/by/4.0/\">CC BY\u003c/a>\u003c/span>\u003c/figcaption>\u003c/figure>\n\u003cp>The same process can work in cancer. In this case, the measurements of gene dysregulation are analogous to movie ratings, movie genres to biological function and users to patients’ tumors. The computer searches across patient tumors to find patterns in gene dysregulation that cause the malignant biological function in each tumor.\u003c/p>\n\u003cp>\u003cstrong>From Movies to Tumors\u003c/strong>\u003c/p>\n\u003cp>The analogy between movie ratings and cancer genetics breaks down in the details. Unless they are minors, Netflix users are not constrained in the movies they watch. But, our bodies instead prefer to minimize the number of genes used for any single function. There are also substantial redundancies between genes. To protect a cell, one gene may easily substitute for another to serve a common function. Gene functions in cancer are even more complex. Tumors are also highly complex and rapidly evolving, depending upon random interactions between the cancer cells and the adjacent healthy organ.\u003c/p>\n\u003cp>To account for these complexities, we have developed a matrix factorization approach called \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/20810601\">Coordinated Gene Activity in Pattern Sets – or CoGAPS for short\u003c/a>. Our algorithm accounts for biology’s minimalism by incorporating as few genes as possible into the patterns for each tumor.\u003c/p>\n\u003cp>Different genes can also substitute for one another, each serving a similar function in a different context. To account for this, CoGAPS simultaneously estimates a statistic for the so-called “patterns” of gene function. This allows us to compute the probability of each gene being used in each biological function in a tumor.\u003c/p>\n\u003cp>For example, many patients take a targeted therapeutic called cetuximab to prolong survival in colorectal, pancreatic, lung and oral cancers. Our recent work found that these patterns can distinguish gene function in cancer cells that respond to the targeted therapeutic agent cetuximab from those that do not.\u003c/p>\n\u003cp>\u003cstrong>The Future\u003c/strong>\u003c/p>\n\u003cp>Unfortunately, cancer therapies that target genes usually cannot cure a patient’s disease. They can only delay progression for a few years. Most patients then relapse, with tumors that are no longer responsive to the treatment.\u003c/p>\n\u003cp>\u003ca href=\"http://www.impactjournals.com/oncotarget/index.php?journal=oncotarget&page=article&op=view&path%5B%5D=12075\">Our own recent work\u003c/a> found that the patterns that distinguish gene function in cells that are responsive to cetuximab include the very genes that give rise to resistance. Emerging immunotherapies are promising and appear to cure some cancers. Yet, far too often, patients with these treatments also relapse. New data that track the cancer genetics after treatment is essential to determine why patients no longer respond.\u003c/p>\n\u003cp>Along with these data, cancer biology also requires a new generation of scientists who can bridge mathematics and statistics to determine the genetic changes occurring over time in drug resistance. In other fields of mathematics, computer programs are able to forecast long-term outcomes. These models are used commonly in weather prediction and investment strategies.\u003c/p>\n\u003cp>In these fields and \u003ca href=\"http://journals.ametsoc.org/doi/abs/10.1175/2010MWR3515.1\">my own previous research\u003c/a>, we have found that updates to the models from large datasets – such as satellite data in the case of weather – improve long-term forecasts. We have all seen the effect of these updates, with weather predictions improving the closer that we are to a storm.\u003c/p>\n\u003cp>\u003cimg src=\"https://counter.theconversation.edu.au/content/74806/count.gif?distributor=republish-lightbox-basic\" alt=\"The Conversation\" width=\"1\" height=\"1\">Just as tools from computer science used can be adapted to both movie recommendations and cancer, the future generation of computational scientists will adopt prediction tools from an array of fields for precision medicine. Ultimately, with these computational tools, we hope to predict tumors’ response to therapy as commonly as we predict the weather, and perhaps more reliably.\u003c/p>\n\u003cp>\u003cem>\u003ca href=\"https://theconversation.com/profiles/elana-fertig-347632\">Elana Fertig\u003c/a>, Assistant Professor of Oncology Biostatistics and Bioinformatics, \u003cem>\u003ca href=\"http://theconversation.com/institutions/johns-hopkins-university-1256\">Johns Hopkins University\u003c/a>\u003c/em>\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cp>Signing up for coverage on the health insurance marketplace should be easier for some people this fall because \u003ca href=\"https://www.cms.gov/CCIIO/Resources/Regulations-and-Guidance/Downloads/Guidance-for-the-Proxy-Direct-Enrollment-Pathway-for-2018-Individual-Market-Open-Enrollment-Period.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">new federal rules\u003c/a> will allow brokers and insurers to handle the entire enrollment process online, from soup to nuts.\u003c/p>\n\u003cp>Some consumer advocates are concerned, though, that customers going this route won't get the comprehensive, impartial plan information they need to make the best decision due to the financial self-interest of insurers and brokers.\u003c/p>\n\u003cp>\"Facilitating the participation of brokers and getting web brokers involved is a good thing for the market,\" says Timothy Jost, an emeritus professor of health care law at Washington and Lee University School of Law in Virginia. But he says there are risks for consumers. \"If you're enrolling with a web broker, you could see 'best deals' that often aren't the best deal for you but are the best deal for the people who are marketing them.\"\u003c/p>\n\u003cp>The guidance was released May 17 by the Centers for Medicare & Medicaid Services, which oversees the online marketplaces. It will streamline the enrollment process for people who work directly with an insurer or broker to shop for coverage for 2018 on \u003ca href=\"http://healthcare.gov/\" target=\"_blank\" rel=\"noopener noreferrer\">healthcare.gov\u003c/a>, the federal marketplace in more than 30 states. States that run their own marketplaces aren't affected by this change.\u003c/p>\n\u003cp>The presumption is that people will continue to buy insurance through the marketplace this fall.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>In the past, people could start the online enrollment process with a broker or insurer, but then they had to bounce off the broker's or insurer's website to go to the federal marketplace website to see if they were eligible for premium tax credits, among other things. In theory, they then could return to the insurer or web broker to complete the enrollment process. In practice, many didn't — though they may have enrolled elsewhere, either completing the process on healthcare.gov or with another vendor.\u003c/p>\n\u003cp>This fall, healthcare.gov consumers with straightforward enrollment needs will be able to complete the entire process on one website. Complex cases and those involving a special enrollment period, for example, will still have to go through the original multi-step process.\u003c/p>\n\u003cp>The staff at online health insurance broker eHealth is thrilled with the change.\u003c/p>\n\u003cp>\"It's a big deal,\" says Nate Purpura, vice president of consumer affairs at eHealth. \"Many people, including our CEO, have been to Washington, D.C., multiple times to explain the benefits of being able to help in this way.\"\u003c/p>\n\u003cp>The \u003ca href=\"https://www.ehealthinsurance.com/\">eHealth\u003c/a> website, which works with 180 insurance carriers nationwide, offers about 75 percent of the plans that are available on healthcare.gov, Purpura says.\u003c/p>\n\u003cp>That's a problem, say some policy analysts. Federal rules require web brokers to display basic information about all the plans that are available on the federal marketplace, whether or not they actually sell them. It includes the name of the plan and insurer that offers it, the type of plan — \u003ca href=\"http://khn.org/news/hows-a-consumer-to-know-what-health-plan-is-best/\" target=\"_blank\" rel=\"noopener noreferrer\">HMO, PPO, EPO\u003c/a> — and metal level (bronze, silver, gold or platinum.) \u003ca href=\"https://www.cms.gov/CCIIO/Programs-and-Initiatives/Health-Insurance-Marketplaces/Downloads/AB-Task-23-Draft-Web-broker-101-Webinar-Slide-Deck-09-30-15.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">Web brokers\u003c/a> must also publish a disclaimer that says the website information about all the available marketplace plans might not be complete and provide a link to healthcare.gov.\u003c/p>\n\u003cp>But the information web brokers present about plans they sell and get a commission for may be much more comprehensive than the information provided about plans they don't handle.\u003c/p>\n\u003cp>On a broker's website, \"consumers won't necessarily have the full range of options,\" says Elizabeth Hagan, associate director of coverage initiatives at Families USA, a consumer advocacy group. \"On healthcare.gov, the plan display is the same for all the options, and consumers have the ability to sort plans based on what they want.\"\u003c/p>\n\u003cp>CMS suggests that brokers not sort their plans in such a way that consumers could be steered to policies from which brokers receive a commission. It also suggests that brokers not run ads or information about other insurance products in the marketplace plan selection area. But these are suggestions, not requirements.\u003c/p>\n\u003cp>In addition, some analysts are concerned that people who don't sign up through healthcare.gov won't receive important notifications about their coverage from insurers and web brokers. In the past, for example, some people have lost their coverage after enrolling outside healthcare.gov because they weren't directed to make their initial \"binder\" payment, or first month's premium, says Sarah Lueck, a senior policy analyst at the Center on Budget and Policy Priorities, which has \u003ca href=\"https://www.regulations.gov/document?D=CMS-2016-0148-0574\" target=\"_blank\" rel=\"noopener noreferrer\">filed comments\u003c/a> on proposed enrollment rules.\u003c/p>\n\u003cp>Enrollment this fall will run for just six weeks, from Nov. 1 to Dec. 15, a significantly shorter time period than in previous years. Encouraging brokers and insurers to sign people up may help more people get signed up in that time frame.\u003c/p>\n\u003cp>\"This is another important step to help create stability in the health insurance market,\" CMS Administrator Seema Verma said in the \u003ca href=\"https://www.cms.gov/Newsroom/MediaReleaseDatabase/Press-releases/2017-Press-releases-items/2017-05-17.html\" target=\"_blank\" rel=\"noopener noreferrer\">press release\u003c/a> announcing the new process.\u003c/p>\n\u003cp>But some analysts remain concerned that details about how consumers' privacy and security will be protected under the new system are still too vague.\u003c/p>\n\u003cp>\"This is really sensitive information, people's tax information, which needs to be highly protected,\" says Jost. \"There are a lot of concerns with confidentiality and privacy. I have some concerns about fraud.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Follow \u003c/em>\u003cem>Michelle Andrews on Twitter: \u003c/em>\u003ca href=\"https://twitter.com/mandrews110\">@mandrews110\u003c/a>.\u003c/p>\n\u003cdiv class=\"fullattribution\">\u003cem>Copyright 2017 Kaiser Health News. To see more, visit \u003ca href=\"http://www.kaiserhealthnews.org/\">Kaiser Health News\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=New+Rules+May+Make+Online+Health+Insurance+Sales+Simpler&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/em>\u003c/div>\n\n",
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"excerpt": "A rules change lets insurers and brokers sell health coverage on the federal exchange directly. That should be easier, but also raises questions about whether customers get unbiased information.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Signing up for coverage on the health insurance marketplace should be easier for some people this fall because \u003ca href=\"https://www.cms.gov/CCIIO/Resources/Regulations-and-Guidance/Downloads/Guidance-for-the-Proxy-Direct-Enrollment-Pathway-for-2018-Individual-Market-Open-Enrollment-Period.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">new federal rules\u003c/a> will allow brokers and insurers to handle the entire enrollment process online, from soup to nuts.\u003c/p>\n\u003cp>Some consumer advocates are concerned, though, that customers going this route won't get the comprehensive, impartial plan information they need to make the best decision due to the financial self-interest of insurers and brokers.\u003c/p>\n\u003cp>\"Facilitating the participation of brokers and getting web brokers involved is a good thing for the market,\" says Timothy Jost, an emeritus professor of health care law at Washington and Lee University School of Law in Virginia. But he says there are risks for consumers. \"If you're enrolling with a web broker, you could see 'best deals' that often aren't the best deal for you but are the best deal for the people who are marketing them.\"\u003c/p>\n\u003cp>The guidance was released May 17 by the Centers for Medicare & Medicaid Services, which oversees the online marketplaces. It will streamline the enrollment process for people who work directly with an insurer or broker to shop for coverage for 2018 on \u003ca href=\"http://healthcare.gov/\" target=\"_blank\" rel=\"noopener noreferrer\">healthcare.gov\u003c/a>, the federal marketplace in more than 30 states. States that run their own marketplaces aren't affected by this change.\u003c/p>\n\u003cp>The presumption is that people will continue to buy insurance through the marketplace this fall.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>In the past, people could start the online enrollment process with a broker or insurer, but then they had to bounce off the broker's or insurer's website to go to the federal marketplace website to see if they were eligible for premium tax credits, among other things. In theory, they then could return to the insurer or web broker to complete the enrollment process. In practice, many didn't — though they may have enrolled elsewhere, either completing the process on healthcare.gov or with another vendor.\u003c/p>\n\u003cp>This fall, healthcare.gov consumers with straightforward enrollment needs will be able to complete the entire process on one website. Complex cases and those involving a special enrollment period, for example, will still have to go through the original multi-step process.\u003c/p>\n\u003cp>The staff at online health insurance broker eHealth is thrilled with the change.\u003c/p>\n\u003cp>\"It's a big deal,\" says Nate Purpura, vice president of consumer affairs at eHealth. \"Many people, including our CEO, have been to Washington, D.C., multiple times to explain the benefits of being able to help in this way.\"\u003c/p>\n\u003cp>The \u003ca href=\"https://www.ehealthinsurance.com/\">eHealth\u003c/a> website, which works with 180 insurance carriers nationwide, offers about 75 percent of the plans that are available on healthcare.gov, Purpura says.\u003c/p>\n\u003cp>That's a problem, say some policy analysts. Federal rules require web brokers to display basic information about all the plans that are available on the federal marketplace, whether or not they actually sell them. It includes the name of the plan and insurer that offers it, the type of plan — \u003ca href=\"http://khn.org/news/hows-a-consumer-to-know-what-health-plan-is-best/\" target=\"_blank\" rel=\"noopener noreferrer\">HMO, PPO, EPO\u003c/a> — and metal level (bronze, silver, gold or platinum.) \u003ca href=\"https://www.cms.gov/CCIIO/Programs-and-Initiatives/Health-Insurance-Marketplaces/Downloads/AB-Task-23-Draft-Web-broker-101-Webinar-Slide-Deck-09-30-15.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">Web brokers\u003c/a> must also publish a disclaimer that says the website information about all the available marketplace plans might not be complete and provide a link to healthcare.gov.\u003c/p>\n\u003cp>But the information web brokers present about plans they sell and get a commission for may be much more comprehensive than the information provided about plans they don't handle.\u003c/p>\n\u003cp>On a broker's website, \"consumers won't necessarily have the full range of options,\" says Elizabeth Hagan, associate director of coverage initiatives at Families USA, a consumer advocacy group. \"On healthcare.gov, the plan display is the same for all the options, and consumers have the ability to sort plans based on what they want.\"\u003c/p>\n\u003cp>CMS suggests that brokers not sort their plans in such a way that consumers could be steered to policies from which brokers receive a commission. It also suggests that brokers not run ads or information about other insurance products in the marketplace plan selection area. But these are suggestions, not requirements.\u003c/p>\n\u003cp>In addition, some analysts are concerned that people who don't sign up through healthcare.gov won't receive important notifications about their coverage from insurers and web brokers. In the past, for example, some people have lost their coverage after enrolling outside healthcare.gov because they weren't directed to make their initial \"binder\" payment, or first month's premium, says Sarah Lueck, a senior policy analyst at the Center on Budget and Policy Priorities, which has \u003ca href=\"https://www.regulations.gov/document?D=CMS-2016-0148-0574\" target=\"_blank\" rel=\"noopener noreferrer\">filed comments\u003c/a> on proposed enrollment rules.\u003c/p>\n\u003cp>Enrollment this fall will run for just six weeks, from Nov. 1 to Dec. 15, a significantly shorter time period than in previous years. Encouraging brokers and insurers to sign people up may help more people get signed up in that time frame.\u003c/p>\n\u003cp>\"This is another important step to help create stability in the health insurance market,\" CMS Administrator Seema Verma said in the \u003ca href=\"https://www.cms.gov/Newsroom/MediaReleaseDatabase/Press-releases/2017-Press-releases-items/2017-05-17.html\" target=\"_blank\" rel=\"noopener noreferrer\">press release\u003c/a> announcing the new process.\u003c/p>\n\u003cp>But some analysts remain concerned that details about how consumers' privacy and security will be protected under the new system are still too vague.\u003c/p>\n\u003cp>\"This is really sensitive information, people's tax information, which needs to be highly protected,\" says Jost. \"There are a lot of concerns with confidentiality and privacy. I have some concerns about fraud.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Follow \u003c/em>\u003cem>Michelle Andrews on Twitter: \u003c/em>\u003ca href=\"https://twitter.com/mandrews110\">@mandrews110\u003c/a>.\u003c/p>\n\u003cdiv class=\"fullattribution\">\u003cem>Copyright 2017 Kaiser Health News. To see more, visit \u003ca href=\"http://www.kaiserhealthnews.org/\">Kaiser Health News\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=New+Rules+May+Make+Online+Health+Insurance+Sales+Simpler&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/em>\u003c/div>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Horrific Ghost Ship Fire Tests Oakland Firefighters' Culture of Not Seeking Help",
"title": "Horrific Ghost Ship Fire Tests Oakland Firefighters' Culture of Not Seeking Help",
"headTitle": "KQED Future of You | KQED Science",
"content": "\u003cp>The day was dawning clear and sunny as Dan Robertson picked his way through the remnants of the inferno. The veteran firefighter was with a few of the other guys, making a final sweep to check that all the flames were out, when morbid curiosity got the better of them. He was cold and wet from water and sweat, and his knees told him it was time to go home. But he wondered, what does a warehouse look like, all burnt up from the inside out?\u003c/p>\n\u003cp>They walked over charcoal debris; some stuff they could recognize, like rugs and alarm clocks. Other stuff had melted into dark indecipherable shapes. The winter air smelled like that moment when you pour water on a big log-filled campfire, but with scents of burning plastic and chemicals mixed in.\u003c/p>\n\u003cp>What Robertson noticed most were the pianos. There were singed pianos everywhere, at least four or five in the front, near the doorway. He remembered being inside six hours earlier, at the height of the blaze, a piano blocking his path as he tried to carry a hose through the crackling flames.\u003c/p>\n\u003cp>[contextly_sidebar id=\"FWeW0K2AmQ9JTRMadzqx4CF7Jv6E82U1\"]By the time they had finished exploring the Ghost Ship warehouse that morning of Dec. 3, 2016, nine people had been confirmed dead; 27 more victims would be found by the end of that week in the building, which had been converted into an artists collective.\u003c/p>\n\u003cp>It wasn’t until Robertson was back at the firehouse, showering and changing into fresh clothes, that his experiences that night finally caught up to him. He drove his Toyota Tundra home and found his wife, Cheri, awake. She had just heard about the fire, and asked whether he was OK. He tried to speak, but nothing came out. He just started sobbing.\u003c/p>\n\u003caside class=\"pullquote alignright\">Many Oakland firefighters told STAT they are still struggling with the emotional fallout from that night six months ago.\u003c/aside>\n\u003cp>Many Oakland firefighters told STAT they are still struggling with the emotional fallout from that night six months ago. But few have sought mental health treatment, because of stigma within the department, combined with a limit on free counseling sessions provided by the city.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Now the Ghost Ship fire has become a catalyst for change in the Oakland Fire Department, where Robertson, a 54-year-old lieutenant and the president of the Oakland firefighters union, and other firefighters are pushing to create a peer counseling program. Firefighters in general are at high risk of developing post-traumatic stress disorder, which can lead to anxiety, substance abuse and even suicide, and that has spurred firefighters in numerous cities to demand that their mental health be treated as urgently as any other injury sustained on the job.\u003c/p>\n\u003cp>Oakland fire officials insist that existing mental health services are sufficient but underused. Deputy Chief Mark Hoffmann pointed to the city’s “incredibly robust workers comp system,” and noted that firefighters who were at the Ghost Ship fire have been offered extra employee assistance program sessions, though few have claimed them.\u003c/p>\n\u003cp>Robertson disagrees. The fact that few firefighters use the current services, he said, is proof that they aren’t working. “Is it underutilized because it’s not needed, or is it underutilized because people have no faith in it?” Robertson asked.\u003c/p>\n\u003cfigure id=\"attachment_403984\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-403984\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/06/RS23048_GettyImages-627450192-qut-800x534-800x534.jpg\" alt=\"\" width=\"800\" height=\"534\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/06/RS23048_GettyImages-627450192-qut-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/RS23048_GettyImages-627450192-qut-800x534-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/RS23048_GettyImages-627450192-qut-800x534-768x513.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/RS23048_GettyImages-627450192-qut-800x534-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/RS23048_GettyImages-627450192-qut-800x534-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/RS23048_GettyImages-627450192-qut-800x534-520x347.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Firefighters clear debris from the entrance to the Ghost Ship warehouse in Oakland, where a fire killed 36 people on Dec. 2, 2016. \u003ccite>((Elijah Nouvelage/Getty Images))\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>‘That Was Going to Sit With Me’\u003c/strong>\u003c/p>\n\u003cp>After the fire came the search for bodies. Eight men and women who participated in the recovery efforts said it was the most difficult aspect of the whole week. One fire captain, who has been with the department for more than 20 years, said thinking about it still makes him feel like he is teetering on the edge of a breakdown. He could see 10 bodies in the ash and rubble when he arrived, and he knew from the way the building collapsed that there would be more.\u003c/p>\n\u003cp>The victims died of smoke inhalation, not fire, so all their features were recognizable. The firefighters could see every detail: The cellphones in their pockets flooded with missed calls. Their tattoos. Their eyelashes. “There was no question,” said another firefighter, “that was going to sit with me for a while.”\u003c/p>\n\u003cp>All of them spoke about that day on condition of anonymity because they weren’t authorized to speak to the news media.\u003c/p>\n\u003cp>The firefighters were quick to emphasize that the Ghost Ship fire was just one in a long series of traumatic events over the course of their careers. In a big city like Oakland, they respond to everything from stubbed toes to heart attacks, from shootings to wildfires to structure fires. When asked to think back on a call that stuck with them, all the firefighters were able to conjure up several memories in perfect detail.\u003c/p>\n\u003cp>There was the firefighter-paramedic who still remembers the faces of two teenage girls shot in the head execution-style on a street. Another firefighter, in the department for less than five years, described a day when they drove an alcoholic to the hospital to get detoxed; as the man left the hospital that evening to go home, he was shot in a botched robbery, and the same team was called back to the scene to pronounce him dead.\u003c/p>\n\u003cp>Firefighters have a metaphor for their emotional baggage: the backpack. After every traumatic event, more junk is thrown into their symbolic backpacks for them to carry around each day. Eventually it will get too heavy; it will drag them down. “My backpack’s full,” said a firefighter still in his 18-month probation period. “It’s super full.”\u003c/p>\n\u003cp>PTSD and other post-trauma mental health issues can be tricky to identify in first responders, said psychologist Mark Kemena, a lead clinician for the West Coast Post-trauma Retreat, because it often builds up over time. It is like having a car alarm that is triggered when even the slightest wind passes by, said Michael Palmertree, a psychologist who has worked extensively with the Oakland Police Department.\u003c/p>\n\u003cp>There have been many studies about rates of PTSD in veterans and police, but reliable statistics for mental trauma in firefighters are hard to find. Suzy Gulliver, director of the Warriors Research Institute, is one of the few clinicians who has done studies on firefighter mental health. Over the course of a lifetime, she said, 20 to 22 percent of firefighters in the United States will experience PTSD — the same rate as returning combat veterans.\u003c/p>\n\u003cp>The consequences can be tragic. According to estimates from the National Fallen Firefighters Foundation, firefighters are three times more likely to die of suicide than in the line of duty. And many PTSD sufferers self-medicate with drugs or alcohol. Robertson said excessive drinking and substance use, including marijuana, have always been common in the fire department, particularly in young members. He himself had to go to drug rehab early in his career.\u003c/p>\n\u003caside class=\"pullquote alignright\">'When you do this for a little while, you’re scarred mentally for sure'\u003ccite>Chris Foley, Veteran fire captain\u003c/cite>\u003c/aside>\n\u003cp>“When you do this for a little while,” said Chris Foley, a veteran fire captain helping Robertson start the peer counseling program, “you’re scarred mentally for sure.”\u003c/p>\n\u003cp>\u003cstrong>Firefighters Wary of \u003c/strong>\u003cstrong>Treatment\u003c/strong>\u003c/p>\n\u003cp>Firefighters like to say that the fire service is 150 years of tradition, unimpeded by progress. When Robertson was a new recruit in the early 1990s, mental health wasn’t talked about in the firehouse. Back then, veterans from World War II, Korea, and Vietnam were on the crew, men who had already experienced their fair share of trauma.\u003c/p>\n\u003cp>“You can’t handle it?” Robertson recalled them saying if they saw a new crew member getting emotional after a run. “Then you need to go somewhere else.”\u003c/p>\n\u003cp>The culture has started changing, Robertson said, but many firefighters still won’t admit that a call affected them, fearing it would be seen as weakness and make their coworkers trust them a little less. In a recent survey conducted by the NBC Bay Area investigative news team, almost 50 percent of the 700 firefighters that responded said that concerns about colleagues not trusting their judgment contributed to the stigma of seeking mental health treatment.\u003c/p>\n\u003cp>Only one of the eight firefighters STAT interviewed who were at the scene that night has sought regular mental health treatment. For the few who do try to seek help, options are limited and, they say, often confusing.\u003c/p>\n\u003cp>Firefighters in Oakland are offered the same counseling program that every Oakland city employee gets: three free therapy sessions every six months through their employee assistance program (EAP). Tom Farris, president of Claremont EAP, which runs the city’s program, said it is designed to be a bridge to longer-term care, though firefighters have to pay for additional sessions through insurance copayments or out of pocket.\u003c/p>\n\u003cp>Complex mental health problems like PTSD are “absolutely not” resolved within three sessions, said Farris, who is a licensed psychologist. But “that’s not really what EAPs are scoped out to handle,” he said. Farris noted that in many cities, first responders are offered six to 10 EAP sessions, not three. More benefits for public safety employees “is a good idea,” he said.\u003c/p>\n\u003cp>Another resource in the fire department is a Critical Incident Stress Management team that is dispatched to fire stations after big events such as the Ghost Ship fire. The team members can vary from priests to other firefighters to experienced psychologists to brand-new therapists trying to boost their resume, and firefighters are required to sit together and debrief the incident.\u003c/p>\n\u003cp>Reactions to CISM are mixed. While psychologists say it can be very helpful, some firefighters say the team members often can’t relate to their experiences. Robertson said many of the CISM therapists wouldn’t be able to hold their own in a burning building. “Why the hell would I open up to you?” he said.\u003c/p>\n\u003cp>Hoffmann, the deputy chief who has been in the fire department 37 years, acknowledged that CISM has been “poorly applied at times” and said team members hadn’t received training “in about two years,” but he believes that it is an effective behavioral health tool.\u003c/p>\n\u003cp>Unsatisfied with the current treatment options, Robertson, along with Foley, has made it his mission in his last two years before retirement to launch a peer counseling program. They want to follow in the steps of other departments, including Phoenix and New York City, that have been using this model for years. Several other Bay Area cities have these programs, including neighboring Berkeley.\u003c/p>\n\u003cp>The International Association of Fire Fighters (IAFF) started offering peer counseling training courses last year and so far has offered 24 courses across North America. Elaine Viccora, a behavioral specialist at IAFF, said it plans to offer three to four trainings each month.\u003c/p>\n\u003cp>Robertson hopes to model the Oakland peer counseling program after the one in Phoenix. Brian French, a Phoenix firefighter, helped develop it in 2010 after four members of the department committed suicide within seven months.\u003c/p>\n\u003cp>Their model, French said, is “listen, refer, support.” Peer counselors are trained to reach out to individual station members after a critical incident and encourage them to get professional counseling if they think it is needed. French also oversees the day-to-day operations of a website called Firestrong, an online portal where fire departments around the country can list area-specific mental health resources for their members.\u003c/p>\n\u003cp>Robertson faces two main barriers as he tries to get the peer-counseling program off the ground: persuading the firefighters to admit when they need help, and convincing Hoffmann and other city administrators to pay for it.\u003c/p>\n\u003cp>It costs more than $250 for one firefighter to be trained as a peer counselor through the IAFF program, and membership to the Firestrong website is an additional $1,500 per year. So far, the union has paid for the training, and Robertson plans to push for city money in union negotiations this August.\u003c/p>\n\u003cp>But Hoffmann said he is worried that the peer counseling program won’t be inclusive and that the people chosen as counselors could just be winners of a popularity contest within the union. “The way they’re describing doing their program,” Hoffman said, “I can’t spend city money on that.”\u003c/p>\n\u003cp>\u003cstrong>‘Just Doing Our Job’\u003c/strong>\u003c/p>\n\u003cp>In early April, Robertson attended an IAFF conference in Phoenix and was surprised to receive a plaque commending the Oakland firefighters on their actions the night of the Ghost Ship fire. The honor made him distinctly uncomfortable. It was weird, he said, to get a plaque “for us just doing our job.” Especially, he added, on a night when 36 people lost their lives.\u003c/p>\n\u003cp>Robertson frowns at any mention of leaving a legacy in the department. That’s not why he’s creating the peer counseling program, he said, though it’s hard for him to come up with the words to describe why firefighter PTSD is such an important issue for him personally.\u003c/p>\n\u003cp>“It’s probably because I’m all fucked up myself by it,” he said.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>This story was \u003ca href=\"https://www.statnews.com/2017/06/02/ghost-ship-firefighters/\" target=\"_blank\" rel=\"noopener noreferrer\">originally published by STAT\u003c/a>, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery.\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>The day was dawning clear and sunny as Dan Robertson picked his way through the remnants of the inferno. The veteran firefighter was with a few of the other guys, making a final sweep to check that all the flames were out, when morbid curiosity got the better of them. He was cold and wet from water and sweat, and his knees told him it was time to go home. But he wondered, what does a warehouse look like, all burnt up from the inside out?\u003c/p>\n\u003cp>They walked over charcoal debris; some stuff they could recognize, like rugs and alarm clocks. Other stuff had melted into dark indecipherable shapes. The winter air smelled like that moment when you pour water on a big log-filled campfire, but with scents of burning plastic and chemicals mixed in.\u003c/p>\n\u003cp>What Robertson noticed most were the pianos. There were singed pianos everywhere, at least four or five in the front, near the doorway. He remembered being inside six hours earlier, at the height of the blaze, a piano blocking his path as he tried to carry a hose through the crackling flames.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>By the time they had finished exploring the Ghost Ship warehouse that morning of Dec. 3, 2016, nine people had been confirmed dead; 27 more victims would be found by the end of that week in the building, which had been converted into an artists collective.\u003c/p>\n\u003cp>It wasn’t until Robertson was back at the firehouse, showering and changing into fresh clothes, that his experiences that night finally caught up to him. He drove his Toyota Tundra home and found his wife, Cheri, awake. She had just heard about the fire, and asked whether he was OK. He tried to speak, but nothing came out. He just started sobbing.\u003c/p>\n\u003caside class=\"pullquote alignright\">Many Oakland firefighters told STAT they are still struggling with the emotional fallout from that night six months ago.\u003c/aside>\n\u003cp>Many Oakland firefighters told STAT they are still struggling with the emotional fallout from that night six months ago. But few have sought mental health treatment, because of stigma within the department, combined with a limit on free counseling sessions provided by the city.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Now the Ghost Ship fire has become a catalyst for change in the Oakland Fire Department, where Robertson, a 54-year-old lieutenant and the president of the Oakland firefighters union, and other firefighters are pushing to create a peer counseling program. Firefighters in general are at high risk of developing post-traumatic stress disorder, which can lead to anxiety, substance abuse and even suicide, and that has spurred firefighters in numerous cities to demand that their mental health be treated as urgently as any other injury sustained on the job.\u003c/p>\n\u003cp>Oakland fire officials insist that existing mental health services are sufficient but underused. Deputy Chief Mark Hoffmann pointed to the city’s “incredibly robust workers comp system,” and noted that firefighters who were at the Ghost Ship fire have been offered extra employee assistance program sessions, though few have claimed them.\u003c/p>\n\u003cp>Robertson disagrees. The fact that few firefighters use the current services, he said, is proof that they aren’t working. “Is it underutilized because it’s not needed, or is it underutilized because people have no faith in it?” Robertson asked.\u003c/p>\n\u003cfigure id=\"attachment_403984\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-403984\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/06/RS23048_GettyImages-627450192-qut-800x534-800x534.jpg\" alt=\"\" width=\"800\" height=\"534\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/06/RS23048_GettyImages-627450192-qut-800x534.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/RS23048_GettyImages-627450192-qut-800x534-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/RS23048_GettyImages-627450192-qut-800x534-768x513.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/RS23048_GettyImages-627450192-qut-800x534-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/RS23048_GettyImages-627450192-qut-800x534-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/RS23048_GettyImages-627450192-qut-800x534-520x347.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Firefighters clear debris from the entrance to the Ghost Ship warehouse in Oakland, where a fire killed 36 people on Dec. 2, 2016. \u003ccite>((Elijah Nouvelage/Getty Images))\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>‘That Was Going to Sit With Me’\u003c/strong>\u003c/p>\n\u003cp>After the fire came the search for bodies. Eight men and women who participated in the recovery efforts said it was the most difficult aspect of the whole week. One fire captain, who has been with the department for more than 20 years, said thinking about it still makes him feel like he is teetering on the edge of a breakdown. He could see 10 bodies in the ash and rubble when he arrived, and he knew from the way the building collapsed that there would be more.\u003c/p>\n\u003cp>The victims died of smoke inhalation, not fire, so all their features were recognizable. The firefighters could see every detail: The cellphones in their pockets flooded with missed calls. Their tattoos. Their eyelashes. “There was no question,” said another firefighter, “that was going to sit with me for a while.”\u003c/p>\n\u003cp>All of them spoke about that day on condition of anonymity because they weren’t authorized to speak to the news media.\u003c/p>\n\u003cp>The firefighters were quick to emphasize that the Ghost Ship fire was just one in a long series of traumatic events over the course of their careers. In a big city like Oakland, they respond to everything from stubbed toes to heart attacks, from shootings to wildfires to structure fires. When asked to think back on a call that stuck with them, all the firefighters were able to conjure up several memories in perfect detail.\u003c/p>\n\u003cp>There was the firefighter-paramedic who still remembers the faces of two teenage girls shot in the head execution-style on a street. Another firefighter, in the department for less than five years, described a day when they drove an alcoholic to the hospital to get detoxed; as the man left the hospital that evening to go home, he was shot in a botched robbery, and the same team was called back to the scene to pronounce him dead.\u003c/p>\n\u003cp>Firefighters have a metaphor for their emotional baggage: the backpack. After every traumatic event, more junk is thrown into their symbolic backpacks for them to carry around each day. Eventually it will get too heavy; it will drag them down. “My backpack’s full,” said a firefighter still in his 18-month probation period. “It’s super full.”\u003c/p>\n\u003cp>PTSD and other post-trauma mental health issues can be tricky to identify in first responders, said psychologist Mark Kemena, a lead clinician for the West Coast Post-trauma Retreat, because it often builds up over time. It is like having a car alarm that is triggered when even the slightest wind passes by, said Michael Palmertree, a psychologist who has worked extensively with the Oakland Police Department.\u003c/p>\n\u003cp>There have been many studies about rates of PTSD in veterans and police, but reliable statistics for mental trauma in firefighters are hard to find. Suzy Gulliver, director of the Warriors Research Institute, is one of the few clinicians who has done studies on firefighter mental health. Over the course of a lifetime, she said, 20 to 22 percent of firefighters in the United States will experience PTSD — the same rate as returning combat veterans.\u003c/p>\n\u003cp>The consequences can be tragic. According to estimates from the National Fallen Firefighters Foundation, firefighters are three times more likely to die of suicide than in the line of duty. And many PTSD sufferers self-medicate with drugs or alcohol. Robertson said excessive drinking and substance use, including marijuana, have always been common in the fire department, particularly in young members. He himself had to go to drug rehab early in his career.\u003c/p>\n\u003caside class=\"pullquote alignright\">'When you do this for a little while, you’re scarred mentally for sure'\u003ccite>Chris Foley, Veteran fire captain\u003c/cite>\u003c/aside>\n\u003cp>“When you do this for a little while,” said Chris Foley, a veteran fire captain helping Robertson start the peer counseling program, “you’re scarred mentally for sure.”\u003c/p>\n\u003cp>\u003cstrong>Firefighters Wary of \u003c/strong>\u003cstrong>Treatment\u003c/strong>\u003c/p>\n\u003cp>Firefighters like to say that the fire service is 150 years of tradition, unimpeded by progress. When Robertson was a new recruit in the early 1990s, mental health wasn’t talked about in the firehouse. Back then, veterans from World War II, Korea, and Vietnam were on the crew, men who had already experienced their fair share of trauma.\u003c/p>\n\u003cp>“You can’t handle it?” Robertson recalled them saying if they saw a new crew member getting emotional after a run. “Then you need to go somewhere else.”\u003c/p>\n\u003cp>The culture has started changing, Robertson said, but many firefighters still won’t admit that a call affected them, fearing it would be seen as weakness and make their coworkers trust them a little less. In a recent survey conducted by the NBC Bay Area investigative news team, almost 50 percent of the 700 firefighters that responded said that concerns about colleagues not trusting their judgment contributed to the stigma of seeking mental health treatment.\u003c/p>\n\u003cp>Only one of the eight firefighters STAT interviewed who were at the scene that night has sought regular mental health treatment. For the few who do try to seek help, options are limited and, they say, often confusing.\u003c/p>\n\u003cp>Firefighters in Oakland are offered the same counseling program that every Oakland city employee gets: three free therapy sessions every six months through their employee assistance program (EAP). Tom Farris, president of Claremont EAP, which runs the city’s program, said it is designed to be a bridge to longer-term care, though firefighters have to pay for additional sessions through insurance copayments or out of pocket.\u003c/p>\n\u003cp>Complex mental health problems like PTSD are “absolutely not” resolved within three sessions, said Farris, who is a licensed psychologist. But “that’s not really what EAPs are scoped out to handle,” he said. Farris noted that in many cities, first responders are offered six to 10 EAP sessions, not three. More benefits for public safety employees “is a good idea,” he said.\u003c/p>\n\u003cp>Another resource in the fire department is a Critical Incident Stress Management team that is dispatched to fire stations after big events such as the Ghost Ship fire. The team members can vary from priests to other firefighters to experienced psychologists to brand-new therapists trying to boost their resume, and firefighters are required to sit together and debrief the incident.\u003c/p>\n\u003cp>Reactions to CISM are mixed. While psychologists say it can be very helpful, some firefighters say the team members often can’t relate to their experiences. Robertson said many of the CISM therapists wouldn’t be able to hold their own in a burning building. “Why the hell would I open up to you?” he said.\u003c/p>\n\u003cp>Hoffmann, the deputy chief who has been in the fire department 37 years, acknowledged that CISM has been “poorly applied at times” and said team members hadn’t received training “in about two years,” but he believes that it is an effective behavioral health tool.\u003c/p>\n\u003cp>Unsatisfied with the current treatment options, Robertson, along with Foley, has made it his mission in his last two years before retirement to launch a peer counseling program. They want to follow in the steps of other departments, including Phoenix and New York City, that have been using this model for years. Several other Bay Area cities have these programs, including neighboring Berkeley.\u003c/p>\n\u003cp>The International Association of Fire Fighters (IAFF) started offering peer counseling training courses last year and so far has offered 24 courses across North America. Elaine Viccora, a behavioral specialist at IAFF, said it plans to offer three to four trainings each month.\u003c/p>\n\u003cp>Robertson hopes to model the Oakland peer counseling program after the one in Phoenix. Brian French, a Phoenix firefighter, helped develop it in 2010 after four members of the department committed suicide within seven months.\u003c/p>\n\u003cp>Their model, French said, is “listen, refer, support.” Peer counselors are trained to reach out to individual station members after a critical incident and encourage them to get professional counseling if they think it is needed. French also oversees the day-to-day operations of a website called Firestrong, an online portal where fire departments around the country can list area-specific mental health resources for their members.\u003c/p>\n\u003cp>Robertson faces two main barriers as he tries to get the peer-counseling program off the ground: persuading the firefighters to admit when they need help, and convincing Hoffmann and other city administrators to pay for it.\u003c/p>\n\u003cp>It costs more than $250 for one firefighter to be trained as a peer counselor through the IAFF program, and membership to the Firestrong website is an additional $1,500 per year. So far, the union has paid for the training, and Robertson plans to push for city money in union negotiations this August.\u003c/p>\n\u003cp>But Hoffmann said he is worried that the peer counseling program won’t be inclusive and that the people chosen as counselors could just be winners of a popularity contest within the union. “The way they’re describing doing their program,” Hoffman said, “I can’t spend city money on that.”\u003c/p>\n\u003cp>\u003cstrong>‘Just Doing Our Job’\u003c/strong>\u003c/p>\n\u003cp>In early April, Robertson attended an IAFF conference in Phoenix and was surprised to receive a plaque commending the Oakland firefighters on their actions the night of the Ghost Ship fire. The honor made him distinctly uncomfortable. It was weird, he said, to get a plaque “for us just doing our job.” Especially, he added, on a night when 36 people lost their lives.\u003c/p>\n\u003cp>Robertson frowns at any mention of leaving a legacy in the department. That’s not why he’s creating the peer counseling program, he said, though it’s hard for him to come up with the words to describe why firefighter PTSD is such an important issue for him personally.\u003c/p>\n\u003cp>“It’s probably because I’m all fucked up myself by it,” he said.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>This story was \u003ca href=\"https://www.statnews.com/2017/06/02/ghost-ship-firefighters/\" target=\"_blank\" rel=\"noopener noreferrer\">originally published by STAT\u003c/a>, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Was the EpiPen Hack Ethical?",
"title": "Was the EpiPen Hack Ethical?",
"headTitle": "KQED Future of You | KQED Science",
"content": "\u003cp>\u003cstrong>Update June 5, 2017 \u003c/strong>\u003c/p>\n\u003cp>From The New York Times Sunday: Charles Duhigg \u003ca href=\"https://www.nytimes.com/2017/06/04/business/angry-about-epipen-prices-executive-dont-care-much.html\" target=\"_blank\" rel=\"noopener noreferrer\">writes\u003c/a> that last year's outrage over Mylan ratcheting up the price of the EpiPen, so that patients\u003ca href=\"http://www.reuters.com/article/us-health-epipen-costs-idUSKBN16Y24O\" target=\"_blank\" rel=\"noopener noreferrer\"> out-of-pocket costs\u003c/a> increased by over 500 percent in a few years, has not resulted in the company lowering the price of the product. Duhigg writes:\u003c/p>\n\u003cblockquote>\u003cp>Mylan has been called out again and again over the years — by the company’s own employees, regulators, patients, politicians and the press — and hasn’t changed, even as revenue has skyrocketed, hitting $11 billion last year. The firm is a case study in the limits of what consumer and employee activism, as well as government oversight, can achieve.\u003c/p>\u003c/blockquote>\n\u003cp>Meanwhile last week, Iowa Republican Sen. Charles Grassley\u003ca href=\"https://www.grassley.senate.gov/news/news-releases/grassley-latest-estimate-taxpayers-overpaid-127-billion-epipen\" target=\"_blank\" rel=\"noopener noreferrer\"> announced\u003c/a> that the government has estimated Mylan may have overcharged Medicaid by as much as $1.27 billion for the EpiPen under the agency's drug rebate program.\u003c/p>\n\u003cp>\u003cstrong>Original post from Jan. 23, 2017\u003c/strong>\u003c/p>\n\u003cp>Should we be free, as individuals, to make and take our own medicine at home? Who’s responsible if we get hurt or die? Do we have to right to do what we wish with our bodies in the interests of survival, healing and self-care? For years, such questions have been at the heart of public health debates over euthanasia – the right to die – and even drug addiction.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>They also lie at the center of the infamous Mylan EpiPen pricing scandal. Last fall, Mylan CEO Heather Bresch appeared before the House Oversight Committee to explain the company’s 548 percent price hike for a simple device that injects a lifesaving anti-allergy hormone, FDA-approved epinephrine.\u003c/p>\n\u003cp>The cost drove desperate allergy patients to seek alternatives, including \u003ca href=\"http://www.thedailybeast.com/articles/2016/09/22/please-do-not-hack-your-own-epipen.html\">the dangerous practice\u003c/a> of shooting epinephrine straight from a vial into a muscle.\u003c/p>\n\u003cp>Enter a new challenger: the pharmaceutical hacking collective \u003ca href=\"https://fourthievesvinegar.org/\">Four Thieves Vinegar.\u003c/a> The group is led by Michael Laufer, a math professor by day at Menlo College in Atherton, California, who shot to internet fame overnight last August when he uploaded a DIY instructional video that went viral, showcasing his homemade version of a copycat EpiPen he called the EpiPencil. \u003ca href=\"https://www.the-parallax.com/2016/09/19/epipencil-hack-costs-fraction-epipen-exclusive/\">His device costs around $35 to construct\u003c/a>– a fraction of Mylan’s $600 brand name dual-pack EpiPen. Anyone can make it at home for personal use, he claims.\u003c/p>\n\u003cp>Laufer isn’t a medical doctor and doesn’t pretend to be. But he’s a numbers guy, well versed in computer science, and has dipped into biology and chemistry. It took him two weeks to research and assemble the plastic components of the EpiPen, an auto injector created by a NASA researcher and marketed in 1980 for $20. Mylan later picked up the patent and has benefited from a monopoly.\u003c/p>\n\u003cfigure id=\"attachment_323237\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-323237\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-800x1013.jpg\" alt=\"Close-up of packaging used in the Epi-Pencil. \" width=\"800\" height=\"1013\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-800x1013.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-160x203.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-768x973.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-1020x1292.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-1920x2432.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-1180x1495.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-960x1216.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-240x304.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-375x475.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-520x659.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Close-up of packaging used in the EpiPencil. \u003ccite>(Four Thieves Vinegar Collective)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Four Thieves Vinegar is named after a folk remedy made from vinegar and spices to ward off bubonic plague. The collective is part of the fast-growing DIY Biology movement, a subculture in which tech meets pharma--a Maker Faire for bio-geeks. In the video, Laufer carefully demonstrates how anyone can do what he did: combine a cheap off-the-shelf needle injector made for diabetics that is easy to buy on the internet, and combine it with a syringe that can be preloaded with a $1 dose of epinephrine.\u003c/p>\n\u003cp>Under fire, Mylan soon released\u003ca href=\"http://newsroom.mylan.com/2016-12-16-Mylan-Launches-the-First-Generic-for-EpiPen-epinephrine-injection-USP-Auto-Injector-as-an-Authorized-Generic\"> a $300 generic of its EpiPen\u003c/a>, but that did little to quiet critics. Georgia Congressman Buddy Carter accused the company of failing to disclose the truth about its profiteering. “There is no transparency, that's the problem here,\" he declared.\u003c/p>\n\u003cp>Leaders also criticized the FDA for its slow-paced approval of generic rivals. Teva Pharmaceutical Industries failed to get approval \u003ca href=\"https://consumerist.com/2016/09/12/teva-will-try-again-to-get-fda-approval-on-epipen-competitor-by-2018/\">for its generic EpiPen\u003c/a> in late 2016, but expects approval by 2018. Meanwhile, CVS Pharmacy has just released a $109.99 generic \u003ca href=\"http://www.pharmacytimes.com/sap-news/cvs-offers-2pack-adrenaclick-for-fraction-of-epipen-price\">two-pack EpiPen called Adrenaclick\u003c/a>. At $55 a pen, it’s close to Laufer’s DIY price -- and provides consumers with a safe, FDA-approved product.\u003c/p>\n\u003cp>That’s exactly what Laufer hoped might happen. As he sees it, his EpiPencil hack was a classic example of The Emperor Has No Clothes: It revealed the actual cost of the plastic auto injector – and showed others how they could make such a device cheaply.\u003c/p>\n\u003cp>It’s a mixed victory, though. The media spotlight gained supporters for Laufer's collective, but also opened him up to criticism. “I get a lot more fan mail then hate mail,” he says, including from parents. But others sharply condemn his actions, and his hacking group’s broader mission: making medicine at home.\u003c/p>\n\u003cp>\u003cstrong>Home Pharma Hacks Raise Safety Questions\u003c/strong>\u003c/p>\n\u003cp>Shortly after Laufer’s hack, the FDA issued a strongly worded warning against its use: “Using unapproved prescription drugs for personal use is a potentially dangerous practice,” an FDA spokesperson \u003ca href=\"http://www.in-pharmatechnologist.com/Regulatory-Safety/US-FDA-warns-against-30-alternative-to-Mylan-s-EpiPen\">told\u003c/a> the website in-PharmaTechnologist. “Unapproved drugs may be contaminated, sub-potent, super-potent or counterfeit.”\u003c/p>\n\u003cp>Critics agree. Yvette d’Entremont, known as SciBabe, is a former chemist-cum-blogger who quickly labeled the EpiPen hack a potential major fail if misused. “It seems like such a bad idea,” she told the Daily Beast. “It’s all fun and games until your product gets contaminated and you get a giant abscess in your muscle.”\u003c/p>\n\u003caside class=\"pullquote alignright\">'I believe in empowering people, in sharing information. We need to talk about alternatives to expensive medication regimens.’\u003ccite>Michael Laufer\u003c/cite>\u003c/aside>\n\u003cp>Contamination and improper dosing can happen with approved drugs too. Epinephrine is a serious drug, used to shock the heart. Laufer defends his device as safe. “In most ways it is equivalent” to Mylan’s EpiPen, he argues, pointing out that it features a safety cap like approved EpiPens, and only carries a single dose.\u003c/p>\n\u003cp>But it’s still untested. And as the father of toxicology himself, Paracelsus, famously warned: all medicine is poison at a certain dose.\u003c/p>\n\u003cp>Oncologist Ezekiel Emanuel, a bioethicist and senior fellow at the Center for American Progress, adds to the chorus of concern, cautioning strongly against using the device.\u003c/p>\n\u003cp>“We have the FDA for a reason. We want to protect the American public from dangerous drugs, which they have no ability to evaluate independently,” he says. “So now we’re going to have some guy who’s going to make a drug and a drug delivery device, put it out there -- no testing, no evaluation of whether it’s safe or effective -- and who the hell knows how many people are going to be hurt -- or not.”\u003c/p>\n\u003cfigure id=\"attachment_323239\" class=\"wp-caption aligncenter\" style=\"max-width: 678px\">\u003cimg class=\"size-full wp-image-323239\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/01/RESEND-capture-of-screenshot-of-Daraprim-chemical-breakdown.jpg\" alt=\"Michael Laufer demonstrates how to lead the Epi-Pencil in a DIY video posted to YouTube.\" width=\"678\" height=\"487\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/01/RESEND-capture-of-screenshot-of-Daraprim-chemical-breakdown.jpg 678w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/RESEND-capture-of-screenshot-of-Daraprim-chemical-breakdown-160x115.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/RESEND-capture-of-screenshot-of-Daraprim-chemical-breakdown-240x172.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/RESEND-capture-of-screenshot-of-Daraprim-chemical-breakdown-375x269.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/RESEND-capture-of-screenshot-of-Daraprim-chemical-breakdown-520x374.jpg 520w\" sizes=\"(max-width: 678px) 100vw, 678px\">\u003cfigcaption class=\"wp-caption-text\">Michael Laufer demonstrates the EpiPencil in a DIY video posted to YouTube. \u003ccite>(Anne-christine d'Adesky/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Adds Emanuel: “In this case he may turn out to be lucky and no one’s hurt. But we don’t want that regime.”\u003c/p>\n\u003cp>He said the solution to high pharmaceutical prices was \"not this cockamamie 'let people throw drugs out there untested,'\" but to reduce the market power that drug companies rely on to set prices.\u003c/p>\n\u003cp>\"We give drug companies monopolies through the patent law, and marketing exclusivity,\" he said. \"No other country gives a monopoly and then expects good behavior on pricing.\u003c/p>\n\u003cp>\"So what we’ve done is say, 'Oh we’re giving drug companies monopoly pricing power and then we’re like shocked, shocked they're raising prices.\"\u003c/p>\n\u003cp>Margaret McLean, director of bioethics at the\u003ca href=\"https://www.scu.edu/ethics/focus-areas/bioethics/\"> Markkula Center for Applied Ethics\u003c/a> in Santa Clara, also agrees using Laufer's device could be dangerous. She herself, carries an EpiPen. It carries a higher copay than her other medicines, so she sympathizes with parents who can’t afford even generic versions. But the safety risks remain serious.\u003c/p>\n\u003cp>“There is always user error,” says McLean, citing incorrect dosing as a concern. “That is true with FDA-approved drugs too. But the error is less if I don’t have to draw up the right amount of epinephrine myself. I’m grateful for the standardization and check on the injector itself, and that the dose in there is appropriate for me.” She doesn’t want to worry about bubbles in the syringe, which are very dangerous. “There are a lot of steps here,” she says of Laufer’s DIY epinephrine device, “where sitting at home in your kitchen, never having done this before, it puts you in a higher risk category then buying it from the pharmacy.”\u003c/p>\n\u003cp>Still, she understands the urgent unmet need for affordable EpiPens. “The FDA is not able to move things through in an expeditious way, so people rightly get antsy.”\u003c/p>\n\u003cp>Perhaps surprisingly, Laufer agrees about the warnings on safety. “Chemistry is science. So, yes, it’s a concern. You have to think immediately, ‘What if it’s misused?’ But that’s a first-order reaction,” he says. “Ideologically, I believe that more access to more information is inherently better for everyone.” He supports FDA safety reviews and clinical trial tests for new drugs and devices that are marketed to consumers. But he stresses, he’s not marketing anything.\u003c/p>\n\u003caside class=\"pullquote alignright\">'We have the FDA for a reason. We want to protect the American public from dangerous drugs which they have no ability to evaluate independently.'\u003ccite>Ezekiel Emanuel, Center for American Progress\u003c/cite>\u003c/aside>\n\u003cp>Where Laufer draws a hard line – and marks his battleground -- is the domain of the private individual. “What I’m saying is, here is something you can think about... If you decide you’d like to adopt it, then that’s the whole ethic: Here is an idea, play with it, if you like -- no strings attached.”\u003c/p>\n\u003cp>\u003cstrong>More Drug Hacks On the Horizon\u003c/strong>\u003c/p>\n\u003cp>In his cramped faculty office, Laufer greets visitors with a warm smile, eager to share his mission and rebut critics who, he feels, have misperceptions about the true goals and the impact of his hacking action. Online, he looks like a steampunk rebel hero in a metal-studded leather jacket, rimless glasses shoved high on his forehead. Offline, he’s natty in a dark suit, purple tie and tie pin, and fancy abacus-shaped cuff links befitting a math geek.\u003c/p>\n\u003cp>“I believe in empowering people, in sharing information,” Laufer says, citing his hacker creed. “We need to talk about alternatives to expensive medication regimens.” He compares the need for a cheap drug delivery device like his EpiPencil to IKEA furniture: something that should be easy to make, with simple instructions for the average consumer.\u003c/p>\n\u003cp>What people do with that information is not his business, he declares. “I don’t know if anyone has built it besides me,” he says of the EpiPencil. “I don’t want to know. I believe in giving people information they can use to make important decisions about their self-care. That’s what I can offer.”[contextly_sidebar id=\"ucdOGkeG5JNKwxC6hhmw4jS3XUbH2VRU\"]\u003c/p>\n\u003cp>Anyone who copies a patented device risks running afoul of patent law. It's a form of civil disobedience with life-or-death stakes. That make it easy to justify, according to Laufer's group, whose \u003ca href=\"https://fourthievesvinegar.org/faq\">website asks\u003c/a>, \"If the choices presented to you are to die, because you cannot afford medication, or violate a copyright, which would you choose?\"\u003c/p>\n\u003cp>Four Thieves Vinegar is presently focused on “small batch” chemistry--medicines that are easy to make with at-home equipment. Laufer’s first successful hack was pyrimethamine (brand name Daraprim), a decades-old drug used to treat toxoplasmosis in AIDS, cancer and malaria patients. Turing Pharmaceuticals purchased the patent in August 2015 and, a month later, \u003ca href=\"http://www.cbsnews.com/news/generic-drug-price-increases-5000-percent-overnight/\">hiked the price for a single Daraprim pill overnight\u003c/a> by 5,000 percent, from $13.50 to $750. Turing CEO Martin Shkreli became a Big Pharma pariah. In response, Laufer made a batch of DIY Daraprim for $2 a pill. So did a group of \u003ca href=\"https://qz.com/851416/why-martin-shkreli-and-turings-daraprim-still-costs-750-in-the-us-when-australian-schoolkids-can-make-it-for-2/\">Australian high school students\u003c/a>.\u003c/p>\n\u003cp>Laufer has now set his sights on several drugs he feels urgently merit greater public access, including the\u003ca href=\"http://www.rawstory.com/2016/05/american-women-increasingly-turn-to-diy-abortion-drugs-after-gop-laws-shut-down-health-clinics/\"> abortion drugs RU-486 (Mifepristone) and Misoprostol\u003c/a>; Solvadi, a hepatitis C drug; and Glaxo’s HIV prevention pill, GSK-744. He’s keenly aware his choices remain controversial and politically charged.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>Looking ahead, Laufer foresees a future of medicine more like Socrates, less like Big Pharma: “Maybe in not too long, the idea of doing chemistry on a personal and individual level and applying it to medicine will be more commonplace. I like dreaming about that.”\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cstrong>Update June 5, 2017 \u003c/strong>\u003c/p>\n\u003cp>From The New York Times Sunday: Charles Duhigg \u003ca href=\"https://www.nytimes.com/2017/06/04/business/angry-about-epipen-prices-executive-dont-care-much.html\" target=\"_blank\" rel=\"noopener noreferrer\">writes\u003c/a> that last year's outrage over Mylan ratcheting up the price of the EpiPen, so that patients\u003ca href=\"http://www.reuters.com/article/us-health-epipen-costs-idUSKBN16Y24O\" target=\"_blank\" rel=\"noopener noreferrer\"> out-of-pocket costs\u003c/a> increased by over 500 percent in a few years, has not resulted in the company lowering the price of the product. Duhigg writes:\u003c/p>\n\u003cblockquote>\u003cp>Mylan has been called out again and again over the years — by the company’s own employees, regulators, patients, politicians and the press — and hasn’t changed, even as revenue has skyrocketed, hitting $11 billion last year. The firm is a case study in the limits of what consumer and employee activism, as well as government oversight, can achieve.\u003c/p>\u003c/blockquote>\n\u003cp>Meanwhile last week, Iowa Republican Sen. Charles Grassley\u003ca href=\"https://www.grassley.senate.gov/news/news-releases/grassley-latest-estimate-taxpayers-overpaid-127-billion-epipen\" target=\"_blank\" rel=\"noopener noreferrer\"> announced\u003c/a> that the government has estimated Mylan may have overcharged Medicaid by as much as $1.27 billion for the EpiPen under the agency's drug rebate program.\u003c/p>\n\u003cp>\u003cstrong>Original post from Jan. 23, 2017\u003c/strong>\u003c/p>\n\u003cp>Should we be free, as individuals, to make and take our own medicine at home? Who’s responsible if we get hurt or die? Do we have to right to do what we wish with our bodies in the interests of survival, healing and self-care? For years, such questions have been at the heart of public health debates over euthanasia – the right to die – and even drug addiction.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>They also lie at the center of the infamous Mylan EpiPen pricing scandal. Last fall, Mylan CEO Heather Bresch appeared before the House Oversight Committee to explain the company’s 548 percent price hike for a simple device that injects a lifesaving anti-allergy hormone, FDA-approved epinephrine.\u003c/p>\n\u003cp>The cost drove desperate allergy patients to seek alternatives, including \u003ca href=\"http://www.thedailybeast.com/articles/2016/09/22/please-do-not-hack-your-own-epipen.html\">the dangerous practice\u003c/a> of shooting epinephrine straight from a vial into a muscle.\u003c/p>\n\u003cp>Enter a new challenger: the pharmaceutical hacking collective \u003ca href=\"https://fourthievesvinegar.org/\">Four Thieves Vinegar.\u003c/a> The group is led by Michael Laufer, a math professor by day at Menlo College in Atherton, California, who shot to internet fame overnight last August when he uploaded a DIY instructional video that went viral, showcasing his homemade version of a copycat EpiPen he called the EpiPencil. \u003ca href=\"https://www.the-parallax.com/2016/09/19/epipencil-hack-costs-fraction-epipen-exclusive/\">His device costs around $35 to construct\u003c/a>– a fraction of Mylan’s $600 brand name dual-pack EpiPen. Anyone can make it at home for personal use, he claims.\u003c/p>\n\u003cp>Laufer isn’t a medical doctor and doesn’t pretend to be. But he’s a numbers guy, well versed in computer science, and has dipped into biology and chemistry. It took him two weeks to research and assemble the plastic components of the EpiPen, an auto injector created by a NASA researcher and marketed in 1980 for $20. Mylan later picked up the patent and has benefited from a monopoly.\u003c/p>\n\u003cfigure id=\"attachment_323237\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-323237\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-800x1013.jpg\" alt=\"Close-up of packaging used in the Epi-Pencil. \" width=\"800\" height=\"1013\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-800x1013.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-160x203.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-768x973.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-1020x1292.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-1920x2432.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-1180x1495.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-960x1216.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-240x304.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-375x475.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/Epi-Pencil-packaging-sent-by-Laufer-520x659.jpg 520w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Close-up of packaging used in the EpiPencil. \u003ccite>(Four Thieves Vinegar Collective)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Four Thieves Vinegar is named after a folk remedy made from vinegar and spices to ward off bubonic plague. The collective is part of the fast-growing DIY Biology movement, a subculture in which tech meets pharma--a Maker Faire for bio-geeks. In the video, Laufer carefully demonstrates how anyone can do what he did: combine a cheap off-the-shelf needle injector made for diabetics that is easy to buy on the internet, and combine it with a syringe that can be preloaded with a $1 dose of epinephrine.\u003c/p>\n\u003cp>Under fire, Mylan soon released\u003ca href=\"http://newsroom.mylan.com/2016-12-16-Mylan-Launches-the-First-Generic-for-EpiPen-epinephrine-injection-USP-Auto-Injector-as-an-Authorized-Generic\"> a $300 generic of its EpiPen\u003c/a>, but that did little to quiet critics. Georgia Congressman Buddy Carter accused the company of failing to disclose the truth about its profiteering. “There is no transparency, that's the problem here,\" he declared.\u003c/p>\n\u003cp>Leaders also criticized the FDA for its slow-paced approval of generic rivals. Teva Pharmaceutical Industries failed to get approval \u003ca href=\"https://consumerist.com/2016/09/12/teva-will-try-again-to-get-fda-approval-on-epipen-competitor-by-2018/\">for its generic EpiPen\u003c/a> in late 2016, but expects approval by 2018. Meanwhile, CVS Pharmacy has just released a $109.99 generic \u003ca href=\"http://www.pharmacytimes.com/sap-news/cvs-offers-2pack-adrenaclick-for-fraction-of-epipen-price\">two-pack EpiPen called Adrenaclick\u003c/a>. At $55 a pen, it’s close to Laufer’s DIY price -- and provides consumers with a safe, FDA-approved product.\u003c/p>\n\u003cp>That’s exactly what Laufer hoped might happen. As he sees it, his EpiPencil hack was a classic example of The Emperor Has No Clothes: It revealed the actual cost of the plastic auto injector – and showed others how they could make such a device cheaply.\u003c/p>\n\u003cp>It’s a mixed victory, though. The media spotlight gained supporters for Laufer's collective, but also opened him up to criticism. “I get a lot more fan mail then hate mail,” he says, including from parents. But others sharply condemn his actions, and his hacking group’s broader mission: making medicine at home.\u003c/p>\n\u003cp>\u003cstrong>Home Pharma Hacks Raise Safety Questions\u003c/strong>\u003c/p>\n\u003cp>Shortly after Laufer’s hack, the FDA issued a strongly worded warning against its use: “Using unapproved prescription drugs for personal use is a potentially dangerous practice,” an FDA spokesperson \u003ca href=\"http://www.in-pharmatechnologist.com/Regulatory-Safety/US-FDA-warns-against-30-alternative-to-Mylan-s-EpiPen\">told\u003c/a> the website in-PharmaTechnologist. “Unapproved drugs may be contaminated, sub-potent, super-potent or counterfeit.”\u003c/p>\n\u003cp>Critics agree. Yvette d’Entremont, known as SciBabe, is a former chemist-cum-blogger who quickly labeled the EpiPen hack a potential major fail if misused. “It seems like such a bad idea,” she told the Daily Beast. “It’s all fun and games until your product gets contaminated and you get a giant abscess in your muscle.”\u003c/p>\n\u003caside class=\"pullquote alignright\">'I believe in empowering people, in sharing information. We need to talk about alternatives to expensive medication regimens.’\u003ccite>Michael Laufer\u003c/cite>\u003c/aside>\n\u003cp>Contamination and improper dosing can happen with approved drugs too. Epinephrine is a serious drug, used to shock the heart. Laufer defends his device as safe. “In most ways it is equivalent” to Mylan’s EpiPen, he argues, pointing out that it features a safety cap like approved EpiPens, and only carries a single dose.\u003c/p>\n\u003cp>But it’s still untested. And as the father of toxicology himself, Paracelsus, famously warned: all medicine is poison at a certain dose.\u003c/p>\n\u003cp>Oncologist Ezekiel Emanuel, a bioethicist and senior fellow at the Center for American Progress, adds to the chorus of concern, cautioning strongly against using the device.\u003c/p>\n\u003cp>“We have the FDA for a reason. We want to protect the American public from dangerous drugs, which they have no ability to evaluate independently,” he says. “So now we’re going to have some guy who’s going to make a drug and a drug delivery device, put it out there -- no testing, no evaluation of whether it’s safe or effective -- and who the hell knows how many people are going to be hurt -- or not.”\u003c/p>\n\u003cfigure id=\"attachment_323239\" class=\"wp-caption aligncenter\" style=\"max-width: 678px\">\u003cimg class=\"size-full wp-image-323239\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/01/RESEND-capture-of-screenshot-of-Daraprim-chemical-breakdown.jpg\" alt=\"Michael Laufer demonstrates how to lead the Epi-Pencil in a DIY video posted to YouTube.\" width=\"678\" height=\"487\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/01/RESEND-capture-of-screenshot-of-Daraprim-chemical-breakdown.jpg 678w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/RESEND-capture-of-screenshot-of-Daraprim-chemical-breakdown-160x115.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/RESEND-capture-of-screenshot-of-Daraprim-chemical-breakdown-240x172.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/RESEND-capture-of-screenshot-of-Daraprim-chemical-breakdown-375x269.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/01/RESEND-capture-of-screenshot-of-Daraprim-chemical-breakdown-520x374.jpg 520w\" sizes=\"(max-width: 678px) 100vw, 678px\">\u003cfigcaption class=\"wp-caption-text\">Michael Laufer demonstrates the EpiPencil in a DIY video posted to YouTube. \u003ccite>(Anne-christine d'Adesky/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Adds Emanuel: “In this case he may turn out to be lucky and no one’s hurt. But we don’t want that regime.”\u003c/p>\n\u003cp>He said the solution to high pharmaceutical prices was \"not this cockamamie 'let people throw drugs out there untested,'\" but to reduce the market power that drug companies rely on to set prices.\u003c/p>\n\u003cp>\"We give drug companies monopolies through the patent law, and marketing exclusivity,\" he said. \"No other country gives a monopoly and then expects good behavior on pricing.\u003c/p>\n\u003cp>\"So what we’ve done is say, 'Oh we’re giving drug companies monopoly pricing power and then we’re like shocked, shocked they're raising prices.\"\u003c/p>\n\u003cp>Margaret McLean, director of bioethics at the\u003ca href=\"https://www.scu.edu/ethics/focus-areas/bioethics/\"> Markkula Center for Applied Ethics\u003c/a> in Santa Clara, also agrees using Laufer's device could be dangerous. She herself, carries an EpiPen. It carries a higher copay than her other medicines, so she sympathizes with parents who can’t afford even generic versions. But the safety risks remain serious.\u003c/p>\n\u003cp>“There is always user error,” says McLean, citing incorrect dosing as a concern. “That is true with FDA-approved drugs too. But the error is less if I don’t have to draw up the right amount of epinephrine myself. I’m grateful for the standardization and check on the injector itself, and that the dose in there is appropriate for me.” She doesn’t want to worry about bubbles in the syringe, which are very dangerous. “There are a lot of steps here,” she says of Laufer’s DIY epinephrine device, “where sitting at home in your kitchen, never having done this before, it puts you in a higher risk category then buying it from the pharmacy.”\u003c/p>\n\u003cp>Still, she understands the urgent unmet need for affordable EpiPens. “The FDA is not able to move things through in an expeditious way, so people rightly get antsy.”\u003c/p>\n\u003cp>Perhaps surprisingly, Laufer agrees about the warnings on safety. “Chemistry is science. So, yes, it’s a concern. You have to think immediately, ‘What if it’s misused?’ But that’s a first-order reaction,” he says. “Ideologically, I believe that more access to more information is inherently better for everyone.” He supports FDA safety reviews and clinical trial tests for new drugs and devices that are marketed to consumers. But he stresses, he’s not marketing anything.\u003c/p>\n\u003caside class=\"pullquote alignright\">'We have the FDA for a reason. We want to protect the American public from dangerous drugs which they have no ability to evaluate independently.'\u003ccite>Ezekiel Emanuel, Center for American Progress\u003c/cite>\u003c/aside>\n\u003cp>Where Laufer draws a hard line – and marks his battleground -- is the domain of the private individual. “What I’m saying is, here is something you can think about... If you decide you’d like to adopt it, then that’s the whole ethic: Here is an idea, play with it, if you like -- no strings attached.”\u003c/p>\n\u003cp>\u003cstrong>More Drug Hacks On the Horizon\u003c/strong>\u003c/p>\n\u003cp>In his cramped faculty office, Laufer greets visitors with a warm smile, eager to share his mission and rebut critics who, he feels, have misperceptions about the true goals and the impact of his hacking action. Online, he looks like a steampunk rebel hero in a metal-studded leather jacket, rimless glasses shoved high on his forehead. Offline, he’s natty in a dark suit, purple tie and tie pin, and fancy abacus-shaped cuff links befitting a math geek.\u003c/p>\n\u003cp>“I believe in empowering people, in sharing information,” Laufer says, citing his hacker creed. “We need to talk about alternatives to expensive medication regimens.” He compares the need for a cheap drug delivery device like his EpiPencil to IKEA furniture: something that should be easy to make, with simple instructions for the average consumer.\u003c/p>\n\u003cp>What people do with that information is not his business, he declares. “I don’t know if anyone has built it besides me,” he says of the EpiPencil. “I don’t want to know. I believe in giving people information they can use to make important decisions about their self-care. That’s what I can offer.”\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Anyone who copies a patented device risks running afoul of patent law. It's a form of civil disobedience with life-or-death stakes. That make it easy to justify, according to Laufer's group, whose \u003ca href=\"https://fourthievesvinegar.org/faq\">website asks\u003c/a>, \"If the choices presented to you are to die, because you cannot afford medication, or violate a copyright, which would you choose?\"\u003c/p>\n\u003cp>Four Thieves Vinegar is presently focused on “small batch” chemistry--medicines that are easy to make with at-home equipment. Laufer’s first successful hack was pyrimethamine (brand name Daraprim), a decades-old drug used to treat toxoplasmosis in AIDS, cancer and malaria patients. Turing Pharmaceuticals purchased the patent in August 2015 and, a month later, \u003ca href=\"http://www.cbsnews.com/news/generic-drug-price-increases-5000-percent-overnight/\">hiked the price for a single Daraprim pill overnight\u003c/a> by 5,000 percent, from $13.50 to $750. Turing CEO Martin Shkreli became a Big Pharma pariah. In response, Laufer made a batch of DIY Daraprim for $2 a pill. So did a group of \u003ca href=\"https://qz.com/851416/why-martin-shkreli-and-turings-daraprim-still-costs-750-in-the-us-when-australian-schoolkids-can-make-it-for-2/\">Australian high school students\u003c/a>.\u003c/p>\n\u003cp>Laufer has now set his sights on several drugs he feels urgently merit greater public access, including the\u003ca href=\"http://www.rawstory.com/2016/05/american-women-increasingly-turn-to-diy-abortion-drugs-after-gop-laws-shut-down-health-clinics/\"> abortion drugs RU-486 (Mifepristone) and Misoprostol\u003c/a>; Solvadi, a hepatitis C drug; and Glaxo’s HIV prevention pill, GSK-744. He’s keenly aware his choices remain controversial and politically charged.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Looking ahead, Laufer foresees a future of medicine more like Socrates, less like Big Pharma: “Maybe in not too long, the idea of doing chemistry on a personal and individual level and applying it to medicine will be more commonplace. I like dreaming about that.”\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "For Facial Recognition of Diseases: More Non-White Photos Needed",
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"content": "\u003cp>Dr. Maximilian Muenke has a superpower: He can diagnose disease just by looking at a person’s face.\u003c/p>\n\u003cp>Specifically, he can spot certain genetic disorders that make telltale impressions on facial features.\u003c/p>\n\u003cp>“Once you’ve done it for a certain amount of years, you walk into a room and it’s like, oh, that child has Williams syndrome,” he said, referring to a genetic disorder that can affect a person’s cognitive abilities and heart.\u003c/p>\n\u003cp class=\"danger-zone\">And that’s an incredibly useful skill, even as genetic sequencing becomes more widespread. For one thing, it can be the factor that sends someone to get a genetic test in the first place. For another, people in many parts of the world don’t have access to genetic tests at all.\u003c/p>\n\u003cp class=\"\">That’s inspired years of effort to train a computer to do the same thing. Software that analyzes a patient’s face for signs of disease could help clinicians better diagnose and treat people with genetic syndromes.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp class=\"\">Some older attempts at facial analysis relied on large, clunky scanners — a tool better suited to a lab, not the field. Now, in the era of smartphones, such efforts have a whole new promise. Face2Gene, a program developed by Boston-based startup FDNA, has a mobile app that clinicians can use to snap photos of their patients and get a list of syndromes they might have.\u003c/p>\n\u003cp>Meanwhile, Muenke and his colleagues at the NIH last month published an important advance: the ability to diagnose disease in a non-Caucasian face.\u003c/p>\n\u003cp>It’s a promising preliminary sign. But if facial recognition software is to be widely useful for diagnoses, software developers and geneticists will need to work together to overcome genetics’ systemic blind spots.\u003c/p>\n\u003cp>\u003cstrong>Diagnoses vs. Probabilities\u003c/strong>\u003c/p>\n\u003cp>The algorithms in general work on the same principles: measuring the size of facial features and their placement to detect patterns. They’re both trained on databases of photographs doctors take of their patients. The NIH works with partners around the world to collect their photos; FDNA accepts photos uploaded to Face2Gene.\u003c/p>\n\u003cp>But they differ in a key way: Whereas the algorithm the NIH uses can predict if someone has a given genetic disorder, the Face2Gene algorithm spits out not diagnoses, but probabilities. The app describes photos as being a certain percent similar to photos of people with one of the 2,000 disorders for which Face2Gene has image data, based on the overall “look” of the face as well as the presence of certain features. However, the app won’t give clinicians a yes or no answer to the question of, “Does my patient have a genetic disorder?”\u003c/p>\n\u003caside class=\"pullquote alignright\">The ultimate goal would be a simple tool that any doctor could use anywhere to get fast results and better diagnose their patients.\u003c/aside>\n\u003cp>“We are not a diagnostic tool, and we will never be a diagnostic tool,” said FDNA CEO Dekel Gelbman.\u003c/p>\n\u003cp>That’s intentional. Face2Gene is meant to be more like a search engine for diseases — a means to an end.\u003c/p>\n\u003cp>Drawing that bright line between Face2Gene and “a diagnostic tool” allows FDNA to stay compliant with FDA regulations governing mobile medical apps while avoiding some of the regulatory burden associated with smartphone-based diagnostic tools.\u003c/p>\n\u003cp>\u003cstrong>Diversity needed\u003c/strong>\u003c/p>\n\u003cp>The algorithm the NIH uses — developed by scientists at Children’s National Health System in Washington, D.C., — seems to work pretty well so far: In 129 cases of Down syndrome, it accurately detected the disorder 94 percent of the time. For DiGeorge syndrome, the numbers were even higher: It had a 95 percent accuracy rate across all 156 cases.\u003c/p>\n\u003cp>Face2Gene declined to provide similar numbers for their technology. “Since Face2Gene is a search and reference informational tool, the terms sensitivity and specificity are difficult to apply to our output,” Gelbman cautioned.\u003c/p>\n\u003cp>But there’s one big stumbling block for both of them, a problem that has dogged medical genetics for decades: Data for non-white populations is sorely lacking.\u003c/p>\n\u003caside class=\"pullquote alignright\">'[My boss] said, there have to be atlases for children from diverse backgrounds. And there aren't. There just aren't.'\u003ccite>Dr. Maximilian Muenke, National Human Genome Research Institute\u003c/cite>\u003c/aside>\n\u003cp>“In every single textbook, the ones we had [when I trained] in Germany and the major textbooks here in the U.S., there are photos of individuals of northern European descent,” Muenke said. “When I told this to my boss, he said there have to be atlases for children from diverse backgrounds. And there aren’t. There just aren’t.” (Today \u003ca href=\"https://research.nhgri.nih.gov/atlas/\" target=\"_blank\" rel=\"noopener noreferrer\">there is\u003c/a> that resource, based on Muenke and the NIH’s work.)\u003c/p>\n\u003cp>So diagnosing diseases from a face alone presents an additional challenge in countries where the majority of the population isn’t of northern European descent, because some facial areas that vary with ethnic background can often overlap with areas that signify a genetic disorder. Eventually, the software will also have to be able to tackle people with mixed ethnic backgrounds, too. “We have thought about it but haven’t gone there yet,” Muenke said.\u003c/p>\n\u003cp>For example, children with Down syndrome often have flat nasal bridges — as do typically developing African or African-American children. Across different races and ethnicities of children there were only two reliable identifiers that could be used to diagnose Down syndrome — the angles between landmark points on the child’s nose and eye, according to a paper Muenke and Marius Linguraru at Children’s National published with their colleagues earlier this year. All of the other “typical” features weren’t significantly more likely to show up when children were compared to ethnically matched controls.\u003c/p>\n\u003cp>In fact, using a Caucasian face as a reference can sometimes be the least representative choice. “One of the findings that I’m very interested in [in] our recent study was that the population that we found to be most different from the others, in terms of facial patterns characteristic of DiGeorge syndrome, was the Caucasian population,” Linguraru said.\u003c/p>\n\u003cp>To continue to fix this problem, both the NIH and Face2Gene need help from more researchers who can upload more patients’ faces — but that’s easier said than done. Confirming a suspected disorder with genetic tests is standard practice today, and there are no genetic labs based in Africa registered in the NIH’s Genetic Testing Registry. Asia and South America are also relatively underserved. [contextly_sidebar id=\"wT5Uz8J7FhxEC1R7bA17oSEBTeV3HZeA\"]\u003c/p>\n\u003cp>Those numbers also reflect the general patterns of distribution for medical geneticists. “Most practitioners are located in North America and Europe,” Gelbman said. Nigeria, for example, doesn’t have a single medical geneticist in the entire country.\u003c/p>\n\u003cp>It’s possible that might change, with time and effort. In addition to his work as a researcher, Muenke directs a program that brings health care professionals from developing countries to the U.S. for a month-long crash course in medical genetics. (The program is funded by the NIH’s Fogarty International Center; President Trump \u003ca href=\"https://www.statnews.com/2017/03/16/nih-fogarty-center/\" target=\"_blank\" rel=\"noopener noreferrer\">eliminated funding for the center\u003c/a> in his 2018 “skinny” budget proposal announced in March.)\u003c/p>\n\u003cp>For now, both algorithms have shown that they can handle a diverse patient set. FDNA scientists published a paper in January showing that their algorithm could better identify Down syndrome after being trained with a more diverse set of faces, and Muenke and Linguraru have also published papers this year demonstrating their algorithm’s ability to identify genetic disorders correctly in children across a variety of ethnic backgrounds.\u003c/p>\n\u003cp>As both groups work on recruiting more researchers, they are also working to push their tech forward. FDNA is working on establishing partnerships with pharmaceutical companies to start their commercial outreach. In theory, these partnerships could contribute to precision medicine efforts or help companies develop new therapies for rare diseases.\u003c/p>\n\u003cp>Meanwhile, Linguraru has his eyes on eventual FDA approval for the algorithm the NIH has used. The ultimate goal would be a simple tool that any doctor could use anywhere to get fast results and better diagnose their patients.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>\u003cspan style=\"font-weight: 400\">This \u003ca href=\"https://ww2.kqed.org/futureofyou/2017/04/11/facial-recognition-software-can-spot-down-syndrome-in-some-population\" target=\"_blank\" rel=\"noopener noreferrer\">story\u003c/a> was originally published by STAT, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery. \u003c/span>\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Dr. Maximilian Muenke has a superpower: He can diagnose disease just by looking at a person’s face.\u003c/p>\n\u003cp>Specifically, he can spot certain genetic disorders that make telltale impressions on facial features.\u003c/p>\n\u003cp>“Once you’ve done it for a certain amount of years, you walk into a room and it’s like, oh, that child has Williams syndrome,” he said, referring to a genetic disorder that can affect a person’s cognitive abilities and heart.\u003c/p>\n\u003cp class=\"danger-zone\">And that’s an incredibly useful skill, even as genetic sequencing becomes more widespread. For one thing, it can be the factor that sends someone to get a genetic test in the first place. For another, people in many parts of the world don’t have access to genetic tests at all.\u003c/p>\n\u003cp class=\"\">That’s inspired years of effort to train a computer to do the same thing. Software that analyzes a patient’s face for signs of disease could help clinicians better diagnose and treat people with genetic syndromes.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp class=\"\">Some older attempts at facial analysis relied on large, clunky scanners — a tool better suited to a lab, not the field. Now, in the era of smartphones, such efforts have a whole new promise. Face2Gene, a program developed by Boston-based startup FDNA, has a mobile app that clinicians can use to snap photos of their patients and get a list of syndromes they might have.\u003c/p>\n\u003cp>Meanwhile, Muenke and his colleagues at the NIH last month published an important advance: the ability to diagnose disease in a non-Caucasian face.\u003c/p>\n\u003cp>It’s a promising preliminary sign. But if facial recognition software is to be widely useful for diagnoses, software developers and geneticists will need to work together to overcome genetics’ systemic blind spots.\u003c/p>\n\u003cp>\u003cstrong>Diagnoses vs. Probabilities\u003c/strong>\u003c/p>\n\u003cp>The algorithms in general work on the same principles: measuring the size of facial features and their placement to detect patterns. They’re both trained on databases of photographs doctors take of their patients. The NIH works with partners around the world to collect their photos; FDNA accepts photos uploaded to Face2Gene.\u003c/p>\n\u003cp>But they differ in a key way: Whereas the algorithm the NIH uses can predict if someone has a given genetic disorder, the Face2Gene algorithm spits out not diagnoses, but probabilities. The app describes photos as being a certain percent similar to photos of people with one of the 2,000 disorders for which Face2Gene has image data, based on the overall “look” of the face as well as the presence of certain features. However, the app won’t give clinicians a yes or no answer to the question of, “Does my patient have a genetic disorder?”\u003c/p>\n\u003caside class=\"pullquote alignright\">The ultimate goal would be a simple tool that any doctor could use anywhere to get fast results and better diagnose their patients.\u003c/aside>\n\u003cp>“We are not a diagnostic tool, and we will never be a diagnostic tool,” said FDNA CEO Dekel Gelbman.\u003c/p>\n\u003cp>That’s intentional. Face2Gene is meant to be more like a search engine for diseases — a means to an end.\u003c/p>\n\u003cp>Drawing that bright line between Face2Gene and “a diagnostic tool” allows FDNA to stay compliant with FDA regulations governing mobile medical apps while avoiding some of the regulatory burden associated with smartphone-based diagnostic tools.\u003c/p>\n\u003cp>\u003cstrong>Diversity needed\u003c/strong>\u003c/p>\n\u003cp>The algorithm the NIH uses — developed by scientists at Children’s National Health System in Washington, D.C., — seems to work pretty well so far: In 129 cases of Down syndrome, it accurately detected the disorder 94 percent of the time. For DiGeorge syndrome, the numbers were even higher: It had a 95 percent accuracy rate across all 156 cases.\u003c/p>\n\u003cp>Face2Gene declined to provide similar numbers for their technology. “Since Face2Gene is a search and reference informational tool, the terms sensitivity and specificity are difficult to apply to our output,” Gelbman cautioned.\u003c/p>\n\u003cp>But there’s one big stumbling block for both of them, a problem that has dogged medical genetics for decades: Data for non-white populations is sorely lacking.\u003c/p>\n\u003caside class=\"pullquote alignright\">'[My boss] said, there have to be atlases for children from diverse backgrounds. And there aren't. There just aren't.'\u003ccite>Dr. Maximilian Muenke, National Human Genome Research Institute\u003c/cite>\u003c/aside>\n\u003cp>“In every single textbook, the ones we had [when I trained] in Germany and the major textbooks here in the U.S., there are photos of individuals of northern European descent,” Muenke said. “When I told this to my boss, he said there have to be atlases for children from diverse backgrounds. And there aren’t. There just aren’t.” (Today \u003ca href=\"https://research.nhgri.nih.gov/atlas/\" target=\"_blank\" rel=\"noopener noreferrer\">there is\u003c/a> that resource, based on Muenke and the NIH’s work.)\u003c/p>\n\u003cp>So diagnosing diseases from a face alone presents an additional challenge in countries where the majority of the population isn’t of northern European descent, because some facial areas that vary with ethnic background can often overlap with areas that signify a genetic disorder. Eventually, the software will also have to be able to tackle people with mixed ethnic backgrounds, too. “We have thought about it but haven’t gone there yet,” Muenke said.\u003c/p>\n\u003cp>For example, children with Down syndrome often have flat nasal bridges — as do typically developing African or African-American children. Across different races and ethnicities of children there were only two reliable identifiers that could be used to diagnose Down syndrome — the angles between landmark points on the child’s nose and eye, according to a paper Muenke and Marius Linguraru at Children’s National published with their colleagues earlier this year. All of the other “typical” features weren’t significantly more likely to show up when children were compared to ethnically matched controls.\u003c/p>\n\u003cp>In fact, using a Caucasian face as a reference can sometimes be the least representative choice. “One of the findings that I’m very interested in [in] our recent study was that the population that we found to be most different from the others, in terms of facial patterns characteristic of DiGeorge syndrome, was the Caucasian population,” Linguraru said.\u003c/p>\n\u003cp>To continue to fix this problem, both the NIH and Face2Gene need help from more researchers who can upload more patients’ faces — but that’s easier said than done. Confirming a suspected disorder with genetic tests is standard practice today, and there are no genetic labs based in Africa registered in the NIH’s Genetic Testing Registry. Asia and South America are also relatively underserved. \u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Those numbers also reflect the general patterns of distribution for medical geneticists. “Most practitioners are located in North America and Europe,” Gelbman said. Nigeria, for example, doesn’t have a single medical geneticist in the entire country.\u003c/p>\n\u003cp>It’s possible that might change, with time and effort. In addition to his work as a researcher, Muenke directs a program that brings health care professionals from developing countries to the U.S. for a month-long crash course in medical genetics. (The program is funded by the NIH’s Fogarty International Center; President Trump \u003ca href=\"https://www.statnews.com/2017/03/16/nih-fogarty-center/\" target=\"_blank\" rel=\"noopener noreferrer\">eliminated funding for the center\u003c/a> in his 2018 “skinny” budget proposal announced in March.)\u003c/p>\n\u003cp>For now, both algorithms have shown that they can handle a diverse patient set. FDNA scientists published a paper in January showing that their algorithm could better identify Down syndrome after being trained with a more diverse set of faces, and Muenke and Linguraru have also published papers this year demonstrating their algorithm’s ability to identify genetic disorders correctly in children across a variety of ethnic backgrounds.\u003c/p>\n\u003cp>As both groups work on recruiting more researchers, they are also working to push their tech forward. FDNA is working on establishing partnerships with pharmaceutical companies to start their commercial outreach. In theory, these partnerships could contribute to precision medicine efforts or help companies develop new therapies for rare diseases.\u003c/p>\n\u003cp>Meanwhile, Linguraru has his eyes on eventual FDA approval for the algorithm the NIH has used. The ultimate goal would be a simple tool that any doctor could use anywhere to get fast results and better diagnose their patients.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>\u003cspan style=\"font-weight: 400\">This \u003ca href=\"https://ww2.kqed.org/futureofyou/2017/04/11/facial-recognition-software-can-spot-down-syndrome-in-some-population\" target=\"_blank\" rel=\"noopener noreferrer\">story\u003c/a> was originally published by STAT, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery. \u003c/span>\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "CRISPR: Research Showing Unexpected Mutations Causes Controversy",
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"content": "\u003ch1>\u003c/h1>\n\u003cp>A new research paper is stirring up controversy among scientists interested in using DNA editing to treat disease.\u003c/p>\n\u003cp>In a two-page article published in the journal Nature Methods on May 30, a group of six scientists \u003ca href=\"https://doi.org/10.1038/nmeth.4293\">report an alarming number of so-called “off-target mutations”\u003c/a> in mice that underwent an experimental gene repair therapy.\u003c/p>\n\u003cp>CRISPR, the hot new gene-editing technique that’s taken biology by storm, is \u003ca href=\"https://theconversation.com/beyond-just-promise-crispr-is-delivering-in-the-lab-today-77596\">no stranger to headlines\u003c/a>. What is unusual, however, is a scientific article so clearly describing a potentially fatal shortcoming of this promising technology.\u003c/p>\n\u003cp>The research community is digesting this news – with many experts suggesting flaws with the experiment, not the revolutionary technique.\u003c/p>\n\u003ch2>Unwanted DNA changes\u003c/h2>\n\u003cp>The research team sought to repair a genetic mutation known to cause a form of blindness in mice. This could be accomplished, \u003ca href=\"https://doi.org/10.1038/mt.2016.107\">they showed\u003c/a>, by changing just one DNA letter in the mouse genome.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>They were able to successfully correct the targeted mutation in each of the two mice they treated. But they also observed an alarming number of additional DNA changes — more than 1,600 per mouse — in areas of the genome they did not intend to modify.\u003c/p>\n\u003cp>The authors attribute these unintended mutations to the experimental CRISPR-based gene editing therapy they used.\u003c/p>\n\u003cfigure class=\"align-center zoomable\">\u003ca href=\"https://cdn.theconversation.com/files/171677/area14mp/file-20170531-25652-1ke2711.png\">\u003cimg src=\"https://cdn.theconversation.com/files/171677/width754/file-20170531-25652-1ke2711.png\" alt=\"\">\u003c/a>\u003cfigcaption>\u003cspan class=\"caption\">Cas9, the CRISPR enzyme that snips DNA, in contact with its target.\u003c/span>\u003cbr>\n\u003cspan class=\"attribution\">\u003cspan class=\"source\">rcsb.org | PDB: 5FW2 | doi:10.2210/pdb5fw2/pdb\u003c/span>, \u003ca class=\"license\" href=\"http://creativecommons.org/licenses/by-nd/4.0/\">CC BY-ND\u003c/a>\u003c/span>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003c/p>\n\u003cp>A central promise of CRISPR-based gene editing is its ability to pinpoint particular genes. But if this technology produces dangerous side effects by creating unexpected and unwanted mutations across the genome, that could hamper or even derail many of its applications.\u003c/p>\n\u003cp>Several previous research articles \u003ca href=\"https://doi.org/10.1038/nmeth.3408\">have reported off-target effects of CRISPR\u003c/a>, but far fewer than this group found.\u003c/p>\n\u003ch2>Reaction is skeptical\u003c/h2>\n\u003cp>The publicly traded biotech companies seeking to commercialize CRISPR-based gene therapies – \u003ca href=\"http://www.editasmedicine.com\">Editas Medicine\u003c/a>, \u003ca href=\"http://www.intelliatx.com\">Intellia Therapeutics\u003c/a> and \u003ca href=\"http://www.crisprtx.com\">Crispr Therapeutics\u003c/a> – \u003ca href=\"https://www.statnews.com/2017/05/30/crispr-stocks-off-target/\">all took immediate stock market hits\u003c/a> based on the news.\u003c/p>\n\u003cp>Experts in the field quickly responded.\u003c/p>\n\u003cp>“Either the enzyme is acting at near optimal efficiency or something fishy is going on here,” \u003ca href=\"https://twitter.com/JMTali/status/869742617839448064\">tweeted\u003c/a> Matthew Taliaferro, a postdoctoral fellow at MIT who \u003ca href=\"http://genes.mit.edu/burgelab/index.html\">studies gene expression and genetic disease\u003c/a>.\u003c/p>\n\u003cp>The Cas9 enzyme in the CRISPR system is what actually cuts DNA, leading to genetic changes. Unusually high levels of enzyme activity could account for the observed off-target mutations – more cutting equals more chances for the cell to mutate its DNA. Different labs use slightly different methods to try to ensure the right amount of cuts happen only where intended.\u003c/p>\n\u003cp>“Unusual methods were used,” \u003ca href=\"https://twitter.com/LluisMontoliu/status/869705549453119489https://twitter.com/LluisMontoliu/status/869705549453119489\">tweeted\u003c/a> Lluis Montoliu, who runs a lab at the Spanish National Centre for Biotechnology that specializes in \u003ca href=\"http://wwwuser.cnb.csic.es/%7Emontoliu/indexe.html\">editing mice genes using CRISPR\u003c/a>. He believes the authors used suboptimal molecular components in their injected CRISPR therapies – specifically a plasmid that causes cells to produce too much Cas9 enzyme – likely leading to the off-target effects they observed.\u003c/p>\n\u003cp>\u003ca href=\"//platform.twitter.com/widgets.js\">//platform.twitter.com/widgets.js\u003c/a>\u003c/p>\n\u003cp>\u003ca href=\"http://jcsmr.anu.edu.au/groups/groups/burgio-group\">Gaétan Burgio\u003c/a>, whose laboratory at the Australian National University is working to understand the role that cellular context plays on CRISPR efficiency, believes the paper’s central claim that CRISPR caused such an alarming number of off-target mutations is “\u003ca href=\"https://twitter.com/GaetanBurgio/status/869676177094393856\">not substantiated\u003c/a>.”\u003c/p>\n\u003cp>Burgio says there could be a range of reasons for seeing so many unexpected changes in the mice, including problems with accurately detecting DNA variation, the extremely small number of mice used, random events happening after Cas9 acted or, he concedes, problems with CRISPR itself.\u003c/p>\n\u003cp>Burgio has been editing the DNA of mice using CRISPR since 2014 and has never seen a comparable level of off-target mutation. He says he’s confident that additional research will refute these recent findings.\u003c/p>\n\u003ch2>Continuing CRISPR work\u003c/h2>\n\u003cp>Although the news of this two-mouse experiment fired up the science-focused parts of the Twittersphere, the issue it raises is not new to the field.\u003c/p>\n\u003cp>Researchers have known for a few years now that off-target mutations are likely given certain CRISPR protocols. More precise variants of the Cas9 enzyme \u003ca href=\"https://doi.org/10.1038/nature16526\">have been shown to improve targeting\u003c/a> in human tissue the lab.\u003c/p>\n\u003cp>Researchers have also focused on developing \u003ca href=\"https://doi.org/10.1101/gr.162339.113\">methods to more efficiently locate off-target mutations\u003c/a> in the animals they study.\u003c/p>\n\u003cp>\u003cimg src=\"https://counter.theconversation.edu.au/content/78638/count.gif?distributor=republish-lightbox-basic\" alt=\"The Conversation\" width=\"1\" height=\"1\">As scientists continue to hone the gene-editing technique, we recognize there’s still a way to go before CRISPR will be ready for safe and effective gene therapy in humans.\u003c/p>\n\u003cp>\u003ca href=\"https://theconversation.com/profiles/ian-haydon-358660\">Ian Haydon\u003c/a>, Doctoral Student in Biochemistry, \u003cem>\u003ca href=\"http://theconversation.com/institutions/university-of-washington-699\">University of Washington\u003c/a>\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>This article was originally published on \u003ca href=\"http://theconversation.com\">The Conversation\u003c/a>. Read the \u003ca href=\"http://theconversation.com/crispr-controversy-raises-questions-about-gene-editing-technique-78638\">original article\u003c/a>.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003ch1>\u003c/h1>\n\u003cp>A new research paper is stirring up controversy among scientists interested in using DNA editing to treat disease.\u003c/p>\n\u003cp>In a two-page article published in the journal Nature Methods on May 30, a group of six scientists \u003ca href=\"https://doi.org/10.1038/nmeth.4293\">report an alarming number of so-called “off-target mutations”\u003c/a> in mice that underwent an experimental gene repair therapy.\u003c/p>\n\u003cp>CRISPR, the hot new gene-editing technique that’s taken biology by storm, is \u003ca href=\"https://theconversation.com/beyond-just-promise-crispr-is-delivering-in-the-lab-today-77596\">no stranger to headlines\u003c/a>. What is unusual, however, is a scientific article so clearly describing a potentially fatal shortcoming of this promising technology.\u003c/p>\n\u003cp>The research community is digesting this news – with many experts suggesting flaws with the experiment, not the revolutionary technique.\u003c/p>\n\u003ch2>Unwanted DNA changes\u003c/h2>\n\u003cp>The research team sought to repair a genetic mutation known to cause a form of blindness in mice. This could be accomplished, \u003ca href=\"https://doi.org/10.1038/mt.2016.107\">they showed\u003c/a>, by changing just one DNA letter in the mouse genome.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>They were able to successfully correct the targeted mutation in each of the two mice they treated. But they also observed an alarming number of additional DNA changes — more than 1,600 per mouse — in areas of the genome they did not intend to modify.\u003c/p>\n\u003cp>The authors attribute these unintended mutations to the experimental CRISPR-based gene editing therapy they used.\u003c/p>\n\u003cfigure class=\"align-center zoomable\">\u003ca href=\"https://cdn.theconversation.com/files/171677/area14mp/file-20170531-25652-1ke2711.png\">\u003cimg src=\"https://cdn.theconversation.com/files/171677/width754/file-20170531-25652-1ke2711.png\" alt=\"\">\u003c/a>\u003cfigcaption>\u003cspan class=\"caption\">Cas9, the CRISPR enzyme that snips DNA, in contact with its target.\u003c/span>\u003cbr>\n\u003cspan class=\"attribution\">\u003cspan class=\"source\">rcsb.org | PDB: 5FW2 | doi:10.2210/pdb5fw2/pdb\u003c/span>, \u003ca class=\"license\" href=\"http://creativecommons.org/licenses/by-nd/4.0/\">CC BY-ND\u003c/a>\u003c/span>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003c/p>\n\u003cp>A central promise of CRISPR-based gene editing is its ability to pinpoint particular genes. But if this technology produces dangerous side effects by creating unexpected and unwanted mutations across the genome, that could hamper or even derail many of its applications.\u003c/p>\n\u003cp>Several previous research articles \u003ca href=\"https://doi.org/10.1038/nmeth.3408\">have reported off-target effects of CRISPR\u003c/a>, but far fewer than this group found.\u003c/p>\n\u003ch2>Reaction is skeptical\u003c/h2>\n\u003cp>The publicly traded biotech companies seeking to commercialize CRISPR-based gene therapies – \u003ca href=\"http://www.editasmedicine.com\">Editas Medicine\u003c/a>, \u003ca href=\"http://www.intelliatx.com\">Intellia Therapeutics\u003c/a> and \u003ca href=\"http://www.crisprtx.com\">Crispr Therapeutics\u003c/a> – \u003ca href=\"https://www.statnews.com/2017/05/30/crispr-stocks-off-target/\">all took immediate stock market hits\u003c/a> based on the news.\u003c/p>\n\u003cp>Experts in the field quickly responded.\u003c/p>\n\u003cp>“Either the enzyme is acting at near optimal efficiency or something fishy is going on here,” \u003ca href=\"https://twitter.com/JMTali/status/869742617839448064\">tweeted\u003c/a> Matthew Taliaferro, a postdoctoral fellow at MIT who \u003ca href=\"http://genes.mit.edu/burgelab/index.html\">studies gene expression and genetic disease\u003c/a>.\u003c/p>\n\u003cp>The Cas9 enzyme in the CRISPR system is what actually cuts DNA, leading to genetic changes. Unusually high levels of enzyme activity could account for the observed off-target mutations – more cutting equals more chances for the cell to mutate its DNA. Different labs use slightly different methods to try to ensure the right amount of cuts happen only where intended.\u003c/p>\n\u003cp>“Unusual methods were used,” \u003ca href=\"https://twitter.com/LluisMontoliu/status/869705549453119489https://twitter.com/LluisMontoliu/status/869705549453119489\">tweeted\u003c/a> Lluis Montoliu, who runs a lab at the Spanish National Centre for Biotechnology that specializes in \u003ca href=\"http://wwwuser.cnb.csic.es/%7Emontoliu/indexe.html\">editing mice genes using CRISPR\u003c/a>. He believes the authors used suboptimal molecular components in their injected CRISPR therapies – specifically a plasmid that causes cells to produce too much Cas9 enzyme – likely leading to the off-target effects they observed.\u003c/p>\n\u003cp>\u003ca href=\"//platform.twitter.com/widgets.js\">//platform.twitter.com/widgets.js\u003c/a>\u003c/p>\n\u003cp>\u003ca href=\"http://jcsmr.anu.edu.au/groups/groups/burgio-group\">Gaétan Burgio\u003c/a>, whose laboratory at the Australian National University is working to understand the role that cellular context plays on CRISPR efficiency, believes the paper’s central claim that CRISPR caused such an alarming number of off-target mutations is “\u003ca href=\"https://twitter.com/GaetanBurgio/status/869676177094393856\">not substantiated\u003c/a>.”\u003c/p>\n\u003cp>Burgio says there could be a range of reasons for seeing so many unexpected changes in the mice, including problems with accurately detecting DNA variation, the extremely small number of mice used, random events happening after Cas9 acted or, he concedes, problems with CRISPR itself.\u003c/p>\n\u003cp>Burgio has been editing the DNA of mice using CRISPR since 2014 and has never seen a comparable level of off-target mutation. He says he’s confident that additional research will refute these recent findings.\u003c/p>\n\u003ch2>Continuing CRISPR work\u003c/h2>\n\u003cp>Although the news of this two-mouse experiment fired up the science-focused parts of the Twittersphere, the issue it raises is not new to the field.\u003c/p>\n\u003cp>Researchers have known for a few years now that off-target mutations are likely given certain CRISPR protocols. More precise variants of the Cas9 enzyme \u003ca href=\"https://doi.org/10.1038/nature16526\">have been shown to improve targeting\u003c/a> in human tissue the lab.\u003c/p>\n\u003cp>Researchers have also focused on developing \u003ca href=\"https://doi.org/10.1101/gr.162339.113\">methods to more efficiently locate off-target mutations\u003c/a> in the animals they study.\u003c/p>\n\u003cp>\u003cimg src=\"https://counter.theconversation.edu.au/content/78638/count.gif?distributor=republish-lightbox-basic\" alt=\"The Conversation\" width=\"1\" height=\"1\">As scientists continue to hone the gene-editing technique, we recognize there’s still a way to go before CRISPR will be ready for safe and effective gene therapy in humans.\u003c/p>\n\u003cp>\u003ca href=\"https://theconversation.com/profiles/ian-haydon-358660\">Ian Haydon\u003c/a>, Doctoral Student in Biochemistry, \u003cem>\u003ca href=\"http://theconversation.com/institutions/university-of-washington-699\">University of Washington\u003c/a>\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>This article was originally published on \u003ca href=\"http://theconversation.com\">The Conversation\u003c/a>. Read the \u003ca href=\"http://theconversation.com/crispr-controversy-raises-questions-about-gene-editing-technique-78638\">original article\u003c/a>.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>African-Americans experience a significant drop in their blood pressure after they move out of highly segregated neighborhoods and into more integrated neighborhoods, researchers reported recently.\u003c/p>\n\u003cp>A \u003ca href=\"http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/10.1001/jamainternmed.2017.1226\">study\u003c/a> involving more than 2,000 African-Americans found that those who moved from the most-segregated neighborhoods to less-segregated neighborhoods later experienced lower systolic blood pressure, a factor in heart attacks and strokes.\u003c/p>\n\u003caside class=\"pullquote alignright\">The researchers found the difference in blood pressure persisted after accounting for other factors that could have played a role, such as changes in income and education.\u003c/aside>\n\u003cp>\"The big message here is that this study shines a light on one of the root causes of heart disease and stroke in our country,\" says \u003ca href=\"http://www.cardiovascularbusiness.com/topics/practice-management/nhlbi-names-david-goff-director-division-cardiovascular-sciences\">David Goff\u003c/a>, director of the division of cardiovascular diseases at the National Heart, Lung, and Blood Institute, which funded the study. It was published in \u003cem>JAMA Internal Medicine\u003c/em>.\u003c/p>\n\u003cp>Doctors have known for a long time that African-Americans are prone to \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0024199/\">high blood pressure\u003c/a>. And previous research had found that people living in segregated places tended to have higher blood pressure.\u003c/p>\n\u003cp>The new study is the first to follow people over time to see how leaving segregated communities could affect the risk of heart disease. This kind of before-and-after study strengthens the observations made in the earlier studies.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Kiarri Kershaw, an assistant professor of preventive medicine at Northwestern University, and her colleagues followed 2,280 African-Americans participating in the \u003ca href=\"https://www.nhlbi.nih.gov/research/resources/obesity/population/cardia.htm\">Coronary Artery Risk Development in Young Adults\u003c/a> study.\u003c/p>\n\u003cp>The subjects were living in highly segregated neighborhoods in Chicago, Minneapolis, Birmingham, Ala., and Oakland, Calif., when the study began in 1985. They were between the ages of 18 and 30 when the study started.\u003c/p>\n\u003cp>The researchers followed the study subjects for 25 years, when they reached the ages of 43 to 55. Those who moved away from highly segregated neighborhoods to less-segregated neighborhoods and stayed there during that period had significantly lower blood pressure.\u003c/p>\n\u003cp>Their systolic blood pressure, the first of the two numbers used to measure blood pressure, was one to five points lower, the researchers reported.\u003c/p>\n\u003cp>While the differences in blood pressure may seem small, that difference among a large number of people could translate into thousands fewer heart attacks and strokes over time. Systolic blood pressure is thought to be the more important number when it comes to developing cardiovascular disease.\u003c/p>\n\u003cp>\"I think it's pretty powerful in the sense that the reasons for their moves were not necessarily for their health, but it has these other added benefits,\" Kershaw says.\u003c/p>\n\u003cp>The study did not examine how moving to less-segregated neighborhoods could affect blood pressure. But Kershaw thinks it's probably because of a combination of factors, including experiencing less stress from being exposed to less violence.\u003c/p>\n\u003cp>\"There's a decent-size body of evidence relating stress to blood pressure and that's one pathway that we hypothesize that segregation influences health — through exposure to violence, things like that — that could increase your stress level and then potentially influence blood pressure,\" Kershaw says.\u003c/p>\n\u003cp>Less-segregated neighborhoods may also provide more economic opportunities for people and their children and access to better schools, which could also reduce stress, she says.\u003c/p>\n\u003cp>In addition, those neighborhoods may also make it easier to live healthier lifestyles by having more access to parks, sidewalks, gyms, grocery stores with more fresh produce and pharmacies to get medication.\u003c/p>\n\u003cp>The researchers found the difference in blood pressure persisted after accounting for other factors that could have played a role, such as changes in income and education.\u003c/p>\n\u003cp>Kershaw acknowledges, however, that moving to less segregated neighborhoods could increase stress in at least one way — by potentially exposing African-Americans to more racism.\u003c/p>\n\u003cp>\"It's certainly possible that those who move to less segregated neighborhoods experience more exposure to racism, which could be one reason why some African-Americans choose to stay in more segregated neighborhoods,\" she wrote in an email. She noted that African-Americans living in more segregated neighborhoods tend to have better mental health.\u003c/p>\n\u003cp>But Kershaw says her study found there was an overall beneficial ffect on blood pressure of leaving a segregated neighborhood.\u003c/p>\n\u003cp>\"The take-home message is that policies that can allow people who are living in segregated neighborhoods to move and live in more integrated neighborhoods have some spillover effects that influences health like blood pressures,\" Kershaw says.\u003c/p>\n\u003cp>Others agree. \"This study is really important,\" says \u003ca href=\"https://www.hsph.harvard.edu/ashish-jha/\">Ashish Jha\u003c/a>, who studies health policy at the Harvard T.H. Chan School of Public Health and was not involved in the study.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"It helps us really feel much more confident that there's something about segregation itself that's leading to worse health outcomes,\" Jha says. \"And this study says that we really do have to tackle segregation if we're going to really improve the health of minorities in America.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Leaving+Segregated+Neighborhoods+Lowers+Blacks%27+Blood+Pressure&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>African-Americans experience a significant drop in their blood pressure after they move out of highly segregated neighborhoods and into more integrated neighborhoods, researchers reported recently.\u003c/p>\n\u003cp>A \u003ca href=\"http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/10.1001/jamainternmed.2017.1226\">study\u003c/a> involving more than 2,000 African-Americans found that those who moved from the most-segregated neighborhoods to less-segregated neighborhoods later experienced lower systolic blood pressure, a factor in heart attacks and strokes.\u003c/p>\n\u003caside class=\"pullquote alignright\">The researchers found the difference in blood pressure persisted after accounting for other factors that could have played a role, such as changes in income and education.\u003c/aside>\n\u003cp>\"The big message here is that this study shines a light on one of the root causes of heart disease and stroke in our country,\" says \u003ca href=\"http://www.cardiovascularbusiness.com/topics/practice-management/nhlbi-names-david-goff-director-division-cardiovascular-sciences\">David Goff\u003c/a>, director of the division of cardiovascular diseases at the National Heart, Lung, and Blood Institute, which funded the study. It was published in \u003cem>JAMA Internal Medicine\u003c/em>.\u003c/p>\n\u003cp>Doctors have known for a long time that African-Americans are prone to \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0024199/\">high blood pressure\u003c/a>. And previous research had found that people living in segregated places tended to have higher blood pressure.\u003c/p>\n\u003cp>The new study is the first to follow people over time to see how leaving segregated communities could affect the risk of heart disease. This kind of before-and-after study strengthens the observations made in the earlier studies.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Kiarri Kershaw, an assistant professor of preventive medicine at Northwestern University, and her colleagues followed 2,280 African-Americans participating in the \u003ca href=\"https://www.nhlbi.nih.gov/research/resources/obesity/population/cardia.htm\">Coronary Artery Risk Development in Young Adults\u003c/a> study.\u003c/p>\n\u003cp>The subjects were living in highly segregated neighborhoods in Chicago, Minneapolis, Birmingham, Ala., and Oakland, Calif., when the study began in 1985. They were between the ages of 18 and 30 when the study started.\u003c/p>\n\u003cp>The researchers followed the study subjects for 25 years, when they reached the ages of 43 to 55. Those who moved away from highly segregated neighborhoods to less-segregated neighborhoods and stayed there during that period had significantly lower blood pressure.\u003c/p>\n\u003cp>Their systolic blood pressure, the first of the two numbers used to measure blood pressure, was one to five points lower, the researchers reported.\u003c/p>\n\u003cp>While the differences in blood pressure may seem small, that difference among a large number of people could translate into thousands fewer heart attacks and strokes over time. Systolic blood pressure is thought to be the more important number when it comes to developing cardiovascular disease.\u003c/p>\n\u003cp>\"I think it's pretty powerful in the sense that the reasons for their moves were not necessarily for their health, but it has these other added benefits,\" Kershaw says.\u003c/p>\n\u003cp>The study did not examine how moving to less-segregated neighborhoods could affect blood pressure. But Kershaw thinks it's probably because of a combination of factors, including experiencing less stress from being exposed to less violence.\u003c/p>\n\u003cp>\"There's a decent-size body of evidence relating stress to blood pressure and that's one pathway that we hypothesize that segregation influences health — through exposure to violence, things like that — that could increase your stress level and then potentially influence blood pressure,\" Kershaw says.\u003c/p>\n\u003cp>Less-segregated neighborhoods may also provide more economic opportunities for people and their children and access to better schools, which could also reduce stress, she says.\u003c/p>\n\u003cp>In addition, those neighborhoods may also make it easier to live healthier lifestyles by having more access to parks, sidewalks, gyms, grocery stores with more fresh produce and pharmacies to get medication.\u003c/p>\n\u003cp>The researchers found the difference in blood pressure persisted after accounting for other factors that could have played a role, such as changes in income and education.\u003c/p>\n\u003cp>Kershaw acknowledges, however, that moving to less segregated neighborhoods could increase stress in at least one way — by potentially exposing African-Americans to more racism.\u003c/p>\n\u003cp>\"It's certainly possible that those who move to less segregated neighborhoods experience more exposure to racism, which could be one reason why some African-Americans choose to stay in more segregated neighborhoods,\" she wrote in an email. She noted that African-Americans living in more segregated neighborhoods tend to have better mental health.\u003c/p>\n\u003cp>But Kershaw says her study found there was an overall beneficial ffect on blood pressure of leaving a segregated neighborhood.\u003c/p>\n\u003cp>\"The take-home message is that policies that can allow people who are living in segregated neighborhoods to move and live in more integrated neighborhoods have some spillover effects that influences health like blood pressures,\" Kershaw says.\u003c/p>\n\u003cp>Others agree. \"This study is really important,\" says \u003ca href=\"https://www.hsph.harvard.edu/ashish-jha/\">Ashish Jha\u003c/a>, who studies health policy at the Harvard T.H. Chan School of Public Health and was not involved in the study.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"It helps us really feel much more confident that there's something about segregation itself that's leading to worse health outcomes,\" Jha says. \"And this study says that we really do have to tackle segregation if we're going to really improve the health of minorities in America.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Leaving+Segregated+Neighborhoods+Lowers+Blacks%27+Blood+Pressure&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Unhappy Physicians Look for Way Out of Medicine",
"title": "Unhappy Physicians Look for Way Out of Medicine",
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"content": "\u003cp>Burned out cardiac surgeon seeks opportunities or empathy,” one message reads. “I feel stuck,” another confides. A third says simply, “I don’t want to be a doctor anymore!”\u003c/p>\n\u003cp>The posts come in from across the globe, each generating its own thread of commiseration and advice. “I just wanted to reach out and let you know I feel your pain,” a doctor-turned-MBA replies to one surgeon. “Your story is so similar to mine,” a respondent marvels to a fellow trainee. “Before you quit, think about what motivated you in the first place, and what changed,” cautions an emergency physician to an early-career doctor.\u003c/p>\n\u003cp>[contextly_sidebar id=\"oX3HffwtSsMXOm6p0o45RTEG7oKjUthT\"]This networking site, and others like it, is where doctors come to discuss the verboten: leaving the medical profession. There are posts from medical school students questioning their career path, and from trainees unable to find a full-time job. And predominantly there are posts by physicians who, after years in the field, are desperate, at the end of their rope, looking for a way out.\u003c/p>\n\u003cp>Some of them are suffering from what doctors know simply by the shorthand of \u003ca href=\"http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/1351351\" target=\"_blank\" rel=\"noopener noreferrer\">burnout\u003c/a> — loss of enthusiasm for work, feelings of cynicism, and a low sense of personal accomplishment. Burnout is on the rise among doctors: One \u003ca href=\"http://www.mayoclinicproceedings.org/article/S0025-6196(15)00716-8/abstract\" target=\"_blank\" rel=\"noopener noreferrer\">study\u003c/a> found that over half of all U.S. physicians are experiencing it, for \u003ca href=\"http://www.medscape.com/viewarticle/838437_3\" target=\"_blank\" rel=\"noopener noreferrer\">reasons\u003c/a> such as long work hours and an increasing burden of bureaucratic tasks. With no nationally available, peer-reviewed data on physician turnover, it’s not clear precisely how many doctors leave because of burnout.\u003c/p>\n\u003caside class=\"pullquote alignright\">'The hardest part of leaving was accepting that it didn’t mean I was a failure.'\u003c/aside>\n\u003cp>But more than most, doctors may find a career change daunting. There’s the time invested — four years of medical school and as many as \u003ca href=\"https://www.aamc.org/download/68806/data/road-doctor.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">nine more years\u003c/a> of specialty training — and perhaps a lucrative salary that’s hard to leave behind. Doctors’ specialized skills may seem less obviously transferable to another field. And the perceived virtuousness of a career in medicine may make some feel guilty to consider leaving.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>So they come to \u003ca href=\"https://www.dropoutclub.org/\" target=\"_blank\" rel=\"noopener noreferrer\">Drop Out Club\u003c/a> to air their worries, seek solace from those who’ve made the leap — and just feel less alone. The site’s forum is where they ask for and offer advice; there’s also a job board where employers post positions, and members can converse privately in individual messaging. Among its 37,000 members, about half are doctors, said Heather Clisby, a company spokesperson.\u003c/p>\n\u003cp>Two recently established Facebook groups aim to meet a similar need. Since their founding last year, Physician Nonclinical Career Hunters and PMG Physicians and Non-Clinical Careers have amassed nearly 3,000 members combined. (The latter group is visible only to those who are invited by current members.)\u003c/p>\n\u003cp>“The frustration with medicine is fueling our growth,” said Dr. Laura Fijolek McKain, the founder of Physician Nonclinical Career Hunters. “Doctors are frustrated with how much time they’re spending on paperwork and other activities that have little to do with patient care.”\u003c/p>\n\u003cp>And on the web they can find what is often hard to come by in daily life: a ready-made community of people grappling with the same questions.\u003c/p>\n\u003cp>\u003cstrong>Finding Solidarity Online\u003c/strong>\u003c/p>\n\u003cp>Dr. Maryam Shapland initially loved her job as an emergency physician. It was busy, exciting, and important. But after a few years, the work felt less exciting and more stressful. She reduced her work hours, but still felt worn out all the time. Then, seven years into her practice, one of her patients sued her.\u003c/p>\n\u003cp>Devastated, she decided to start searching for a new career.\u003c/p>\n\u003caside class=\"pullquote alignright\">'People thought I made good money, helped people, and had a nice life,” she said. “All the checkboxes were marked off, so what did I have to complain about?'\u003c/aside>\n\u003cp>At first, she felt guilty for wanting to leave. “People thought I made good money, helped people, and had a nice life,” she said. “All the checkboxes were marked off, so what did I have to complain about?”\u003c/p>\n\u003cp>Then she found Drop Out Club. She quickly became a “lurker” on the member forum, reading messages posted by others. “Reading all these stories of people trying to leave made me realize I wasn’t crazy for being unhappy in this career I had worked so hard for,” she said.\u003c/p>\n\u003cp>Shapland hired a career coach, started actively using LinkedIn, and in 2015 was hired as a medical director at a life insurance company. “Leaving medicine felt like giving up a big part of my identity,” she said. “But I’m proud of what I do now. Most importantly, I’m happy and thriving.”\u003c/p>\n\u003cp>And now that’s a message she’s hoping to transmit to others in her shoes. In retrospect, Shapland said, Drop Out Club suffered from too many mentees and not enough mentors. Once she made it to the other side, she decided to regularly provide career advice — and her email address — on the forum. Since her first post in 2015, she said she gets approximately one new person a week emailing her to seek advice on leaving medicine.\u003c/p>\n\u003cp>\u003cstrong>Grappling With Leaving\u003c/strong>\u003c/p>\n\u003cp>One of those was Dr. Ashwini Zenooz, a radiologist who had practiced for over 10 years. Surrounded by colleagues who seemingly loved their jobs, Zenooz felt that she couldn’t discuss wanting to leave medicine with them. Finding Drop Out Club “was a way to extend my network to people closer to my needs,” she said. Browsing the forum, Zenooz saw Shapland’s email address and sent her a note — which became an extended email conversation, and, eventually, an hourlong phone call one afternoon. Zenooz ultimately took a job in health policy.\u003c/p>\n\u003cp>Many of the inquiries Shapland receives are related to financial concerns. Medical education can leave doctors with up to a half million dollars of debt, making many feel tied to a high-paying job. Others struggle with the “golden handcuffs” of medicine, unable to leave lifestyles supported by comfortable incomes.\u003c/p>\n\u003cp>Fear of the unknown can also be daunting, especially to those who have spent their entire careers in medicine. “Leaving behind the familiar and going into the unknown was scary at first. I had been doing this job for decades, and there was a certain comfort level with that,” says Dr. Joshua Schechtel, a hospitalist who left clinical practice this year.\u003c/p>\n\u003cp>Dr. K.K., an oncologist who requested anonymity in case she returns to clinical practice in the future, found Drop Out Club while trying to make sense of the various nonclinical career options. She posted questions and read stories of members’ career paths out of medicine. “I saw proof that a lot of people who left medicine found other jobs and were happy,” she said. “It made me realize that I, too, could find a way out.” She recently left clinical practice and now works as a consultant for health insurance companies. “Leaving my patients and their families was very hard,” she said — but “my new role allows for a much healthier work-life balance.”\u003c/p>\n\u003cp>Long hours, grim tasks: Doctors in training face high risk of depression\u003c/p>\n\u003cp>Still, not everyone finds meaningful support through online communities.\u003c/p>\n\u003cp>Some simply want more hands-on support than a peer-to-peer site can provide. Dr. Mary Schultheis, a colorectal surgeon, joined Drop Out Club after 10 years in private practice. “The hardest part of leaving was accepting that it didn’t mean I was a failure,” she said. “Drop Out Club couldn’t help me come to terms with this, but working with a career coach did.” She left clinical practice this year and now balances part-time consulting and health insurance industry roles.\u003c/p>\n\u003cp>Others find there aren’t enough people to provide advice. “There were a lot of people who piled on to commiserate, but it was hard to find actionable advice on Drop Out Club,” said a dermatologist in California. She reverted to networking the “old-fashioned way, meeting people locally and building a Rolodex,” which ultimately led to her current mix of part-time consulting and part-time medicine.\u003c/p>\n\u003cp>Shapland agrees that the site — and the medical field more generally — needs doctors who have left clinical practice to speak up and share their unconventional career paths. They need to make themselves available to help as she did, she said. “Just being a living, breathing example of someone who made it to the other side and will answer a couple questions can help someone take that leap of faith.” She’s proof of it.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>\u003cspan style=\"font-weight: 400\">This \u003ca href=\"https://www.statnews.com/2017/05/24/doctors-burnout-online-community/\">story\u003c/a> was originally published by STAT, an online publication of Boston Globe Media that covers health, medicine, and scientific discovery. \u003c/span>\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Burned out cardiac surgeon seeks opportunities or empathy,” one message reads. “I feel stuck,” another confides. A third says simply, “I don’t want to be a doctor anymore!”\u003c/p>\n\u003cp>The posts come in from across the globe, each generating its own thread of commiseration and advice. “I just wanted to reach out and let you know I feel your pain,” a doctor-turned-MBA replies to one surgeon. “Your story is so similar to mine,” a respondent marvels to a fellow trainee. “Before you quit, think about what motivated you in the first place, and what changed,” cautions an emergency physician to an early-career doctor.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>This networking site, and others like it, is where doctors come to discuss the verboten: leaving the medical profession. There are posts from medical school students questioning their career path, and from trainees unable to find a full-time job. And predominantly there are posts by physicians who, after years in the field, are desperate, at the end of their rope, looking for a way out.\u003c/p>\n\u003cp>Some of them are suffering from what doctors know simply by the shorthand of \u003ca href=\"http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/1351351\" target=\"_blank\" rel=\"noopener noreferrer\">burnout\u003c/a> — loss of enthusiasm for work, feelings of cynicism, and a low sense of personal accomplishment. Burnout is on the rise among doctors: One \u003ca href=\"http://www.mayoclinicproceedings.org/article/S0025-6196(15)00716-8/abstract\" target=\"_blank\" rel=\"noopener noreferrer\">study\u003c/a> found that over half of all U.S. physicians are experiencing it, for \u003ca href=\"http://www.medscape.com/viewarticle/838437_3\" target=\"_blank\" rel=\"noopener noreferrer\">reasons\u003c/a> such as long work hours and an increasing burden of bureaucratic tasks. With no nationally available, peer-reviewed data on physician turnover, it’s not clear precisely how many doctors leave because of burnout.\u003c/p>\n\u003caside class=\"pullquote alignright\">'The hardest part of leaving was accepting that it didn’t mean I was a failure.'\u003c/aside>\n\u003cp>But more than most, doctors may find a career change daunting. There’s the time invested — four years of medical school and as many as \u003ca href=\"https://www.aamc.org/download/68806/data/road-doctor.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">nine more years\u003c/a> of specialty training — and perhaps a lucrative salary that’s hard to leave behind. Doctors’ specialized skills may seem less obviously transferable to another field. And the perceived virtuousness of a career in medicine may make some feel guilty to consider leaving.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>So they come to \u003ca href=\"https://www.dropoutclub.org/\" target=\"_blank\" rel=\"noopener noreferrer\">Drop Out Club\u003c/a> to air their worries, seek solace from those who’ve made the leap — and just feel less alone. The site’s forum is where they ask for and offer advice; there’s also a job board where employers post positions, and members can converse privately in individual messaging. Among its 37,000 members, about half are doctors, said Heather Clisby, a company spokesperson.\u003c/p>\n\u003cp>Two recently established Facebook groups aim to meet a similar need. Since their founding last year, Physician Nonclinical Career Hunters and PMG Physicians and Non-Clinical Careers have amassed nearly 3,000 members combined. (The latter group is visible only to those who are invited by current members.)\u003c/p>\n\u003cp>“The frustration with medicine is fueling our growth,” said Dr. Laura Fijolek McKain, the founder of Physician Nonclinical Career Hunters. “Doctors are frustrated with how much time they’re spending on paperwork and other activities that have little to do with patient care.”\u003c/p>\n\u003cp>And on the web they can find what is often hard to come by in daily life: a ready-made community of people grappling with the same questions.\u003c/p>\n\u003cp>\u003cstrong>Finding Solidarity Online\u003c/strong>\u003c/p>\n\u003cp>Dr. Maryam Shapland initially loved her job as an emergency physician. It was busy, exciting, and important. But after a few years, the work felt less exciting and more stressful. She reduced her work hours, but still felt worn out all the time. Then, seven years into her practice, one of her patients sued her.\u003c/p>\n\u003cp>Devastated, she decided to start searching for a new career.\u003c/p>\n\u003caside class=\"pullquote alignright\">'People thought I made good money, helped people, and had a nice life,” she said. “All the checkboxes were marked off, so what did I have to complain about?'\u003c/aside>\n\u003cp>At first, she felt guilty for wanting to leave. “People thought I made good money, helped people, and had a nice life,” she said. “All the checkboxes were marked off, so what did I have to complain about?”\u003c/p>\n\u003cp>Then she found Drop Out Club. She quickly became a “lurker” on the member forum, reading messages posted by others. “Reading all these stories of people trying to leave made me realize I wasn’t crazy for being unhappy in this career I had worked so hard for,” she said.\u003c/p>\n\u003cp>Shapland hired a career coach, started actively using LinkedIn, and in 2015 was hired as a medical director at a life insurance company. “Leaving medicine felt like giving up a big part of my identity,” she said. “But I’m proud of what I do now. Most importantly, I’m happy and thriving.”\u003c/p>\n\u003cp>And now that’s a message she’s hoping to transmit to others in her shoes. In retrospect, Shapland said, Drop Out Club suffered from too many mentees and not enough mentors. Once she made it to the other side, she decided to regularly provide career advice — and her email address — on the forum. Since her first post in 2015, she said she gets approximately one new person a week emailing her to seek advice on leaving medicine.\u003c/p>\n\u003cp>\u003cstrong>Grappling With Leaving\u003c/strong>\u003c/p>\n\u003cp>One of those was Dr. Ashwini Zenooz, a radiologist who had practiced for over 10 years. Surrounded by colleagues who seemingly loved their jobs, Zenooz felt that she couldn’t discuss wanting to leave medicine with them. Finding Drop Out Club “was a way to extend my network to people closer to my needs,” she said. Browsing the forum, Zenooz saw Shapland’s email address and sent her a note — which became an extended email conversation, and, eventually, an hourlong phone call one afternoon. Zenooz ultimately took a job in health policy.\u003c/p>\n\u003cp>Many of the inquiries Shapland receives are related to financial concerns. Medical education can leave doctors with up to a half million dollars of debt, making many feel tied to a high-paying job. Others struggle with the “golden handcuffs” of medicine, unable to leave lifestyles supported by comfortable incomes.\u003c/p>\n\u003cp>Fear of the unknown can also be daunting, especially to those who have spent their entire careers in medicine. “Leaving behind the familiar and going into the unknown was scary at first. I had been doing this job for decades, and there was a certain comfort level with that,” says Dr. Joshua Schechtel, a hospitalist who left clinical practice this year.\u003c/p>\n\u003cp>Dr. K.K., an oncologist who requested anonymity in case she returns to clinical practice in the future, found Drop Out Club while trying to make sense of the various nonclinical career options. She posted questions and read stories of members’ career paths out of medicine. “I saw proof that a lot of people who left medicine found other jobs and were happy,” she said. “It made me realize that I, too, could find a way out.” She recently left clinical practice and now works as a consultant for health insurance companies. “Leaving my patients and their families was very hard,” she said — but “my new role allows for a much healthier work-life balance.”\u003c/p>\n\u003cp>Long hours, grim tasks: Doctors in training face high risk of depression\u003c/p>\n\u003cp>Still, not everyone finds meaningful support through online communities.\u003c/p>\n\u003cp>Some simply want more hands-on support than a peer-to-peer site can provide. Dr. Mary Schultheis, a colorectal surgeon, joined Drop Out Club after 10 years in private practice. “The hardest part of leaving was accepting that it didn’t mean I was a failure,” she said. “Drop Out Club couldn’t help me come to terms with this, but working with a career coach did.” She left clinical practice this year and now balances part-time consulting and health insurance industry roles.\u003c/p>\n\u003cp>Others find there aren’t enough people to provide advice. “There were a lot of people who piled on to commiserate, but it was hard to find actionable advice on Drop Out Club,” said a dermatologist in California. She reverted to networking the “old-fashioned way, meeting people locally and building a Rolodex,” which ultimately led to her current mix of part-time consulting and part-time medicine.\u003c/p>\n\u003cp>Shapland agrees that the site — and the medical field more generally — needs doctors who have left clinical practice to speak up and share their unconventional career paths. They need to make themselves available to help as she did, she said. “Just being a living, breathing example of someone who made it to the other side and will answer a couple questions can help someone take that leap of faith.” She’s proof of it.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cp>Sleek, high-tech wristbands are extremely popular these days, promising to measure heart rate, steps taken during the day, sleep, calories burned and even stress.\u003c/p>\n\u003cp>And, increasingly, patients are heading to the doctor armed with reams of data gathered from their devices. \"They're essentially asking us to digest the data and offer advice about how to avoid cardiovascular disease,\" says cardiologist \u003ca href=\"https://profiles.stanford.edu/euan-ashley\">Euan Ashley\u003c/a>, associate professor of medicine at the Stanford University Medical Center and Stanford Hospital and Clinics in northern California. And, being somewhat near Silicon Valley, he says he gets a lot of tech-savvy patients bringing fitness-tracker data to appointments.\u003c/p>\n\u003cp>The problem, he says, is that he just didn't know how reliable that data was. So, he and colleagues decided to study seven of the most popular devices and compare their accuracy to the gold-standard tests that doctor's use.\u003c/p>\n\u003cp>They looked at two metrics: heart rate and calories burned. For heart rate, the fitness trackers were compared to findings from an \u003ca href=\"https://www.nhlbi.nih.gov/health/health-topics/topics/ekg\">electro-cardiogram\u003c/a>, or EKG. It turned out the devices were \"surprisingly accurate\", says Ashley. \"Most devices most of the time were 'off' by only about 5 percent.\"\u003c/p>\n\u003cp>However, when it came to measuring how many calories a person burned, the findings were way off, says Ashley, showing a degree of inaccuracy that ranged from 20 percent to 93 percent, meaning 93 percent of the time the worst-performing device was wrong. Researchers compared the findings of the wrist devices to a sophisticated \u003ca href=\"http://www.cosmedusa.com/en/\">system\u003c/a> of calculating metabolism which measures oxygen and carbon dioxide in people's breath.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"This is a very well-designed and well-done study,\" says \u003ca href=\"http://www.timchurchmd.com/\">Dr. Tim Church\u003c/a>, a professor of preventative medicine at Pennington Biomedical Research Center at Louisiana State University who was not involved in the study. Church routinely consults with companies about how to introduce wellness strategies into the workplace. Being wrong 93 percent of the time means the findings from the fitness tracker are more \"fiction than fact,\" he says, which can actually undermine a healthy diet. \"It's just human nature. People are checking these inaccurate counts and they think they've earned a muffin or earned some ice cream and they're sabotaging their weight-loss program.\"\u003c/p>\n\u003cp>Church points to a \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/27654602\">study\u003c/a> last year which found participants in a weight-loss program who also wore fitness trackers actually lost less weight than participants who didn't wear the trackers. \"It's an instance of no information is probably better than having bad information,\" he says.\u003c/p>\n\u003cp>The Stanford \u003ca href=\"http://www.mdpi.com/2075-4426/7/2/3\">study was published\u003c/a> in the \u003cem>Journal of Personalized Medicine\u003c/em>. It was relatively small, with 29 men and 31 women. In addition to the primary results, there were some other interesting findings. In certain groups of people — for example, those with darker skin, higher BMIs and men — the error made by devices was actually greater than for Caucasian women with a more healthy weight.\u003c/p>\n\u003cp>\"So, for those for whom it might matter the most, who are trying to lose weight, the error was actually greater,\" says Ashley, who doesn't know why this may be the case. He speculates that it could be that companies use a fairly narrow group of people for testing the equations they use to measure heart rate and calories burned.\u003c/p>\n\u003cp>The study didn't look at how well devices count steps or monitor sleep or stress. The take-home message, says Ashley, is to not rely on the devices to measure total calories burned. Instead focus on eating what we know is a healthy diet, which is low in sugar and high in fiber, and to \"eat not until you're full but until you're no longer hungry.\"\u003c/p>\n\u003cp>And, of course, people should exercise, he says, adding, \"we have no more important intervention than exercise for the prevention of any number of diseases.\"\u003c/p>\n\u003cp>Makers of two devices, Fitbit and PulseOn say they remain confident in the performance of the trackers both in measuring heart rate and calories burned. In a statement, PulseOn questioned the study's methodology, saying that the high errors for calorie measurements \"suggest that the authors may not have properly set all the user parameters on the device.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Mark Gorelick, the chief science officer at the device-maker Mio Global, says, \"we agree that more accurate calorie estimation is important for the industry as a whole, since most individuals are monitoring calorie deficits for weight loss.\" The other device makers did not immediately respond to requests for comment.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Fitness+Trackers%3A+Good+at+Measuring+Heart+Rate%2C+Not+So+Good+At+Measuring+Calories&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"This is a very well-designed and well-done study,\" says \u003ca href=\"http://www.timchurchmd.com/\">Dr. Tim Church\u003c/a>, a professor of preventative medicine at Pennington Biomedical Research Center at Louisiana State University who was not involved in the study. Church routinely consults with companies about how to introduce wellness strategies into the workplace. Being wrong 93 percent of the time means the findings from the fitness tracker are more \"fiction than fact,\" he says, which can actually undermine a healthy diet. \"It's just human nature. People are checking these inaccurate counts and they think they've earned a muffin or earned some ice cream and they're sabotaging their weight-loss program.\"\u003c/p>\n\u003cp>Church points to a \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/27654602\">study\u003c/a> last year which found participants in a weight-loss program who also wore fitness trackers actually lost less weight than participants who didn't wear the trackers. \"It's an instance of no information is probably better than having bad information,\" he says.\u003c/p>\n\u003cp>The Stanford \u003ca href=\"http://www.mdpi.com/2075-4426/7/2/3\">study was published\u003c/a> in the \u003cem>Journal of Personalized Medicine\u003c/em>. It was relatively small, with 29 men and 31 women. In addition to the primary results, there were some other interesting findings. In certain groups of people — for example, those with darker skin, higher BMIs and men — the error made by devices was actually greater than for Caucasian women with a more healthy weight.\u003c/p>\n\u003cp>\"So, for those for whom it might matter the most, who are trying to lose weight, the error was actually greater,\" says Ashley, who doesn't know why this may be the case. He speculates that it could be that companies use a fairly narrow group of people for testing the equations they use to measure heart rate and calories burned.\u003c/p>\n\u003cp>The study didn't look at how well devices count steps or monitor sleep or stress. The take-home message, says Ashley, is to not rely on the devices to measure total calories burned. Instead focus on eating what we know is a healthy diet, which is low in sugar and high in fiber, and to \"eat not until you're full but until you're no longer hungry.\"\u003c/p>\n\u003cp>And, of course, people should exercise, he says, adding, \"we have no more important intervention than exercise for the prevention of any number of diseases.\"\u003c/p>\n\u003cp>Makers of two devices, Fitbit and PulseOn say they remain confident in the performance of the trackers both in measuring heart rate and calories burned. In a statement, PulseOn questioned the study's methodology, saying that the high errors for calorie measurements \"suggest that the authors may not have properly set all the user parameters on the device.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Mark Gorelick, the chief science officer at the device-maker Mio Global, says, \"we agree that more accurate calorie estimation is important for the industry as a whole, since most individuals are monitoring calorie deficits for weight loss.\" The other device makers did not immediately respond to requests for comment.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Fitness+Trackers%3A+Good+at+Measuring+Heart+Rate%2C+Not+So+Good+At+Measuring+Calories&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Medical abortions done at home with online help and pills sent in the mail appear to be just as safe as those done at a clinic, according to a new study.\u003c/p>\n\u003cp>The research tracked the outcomes of 1,000 women in Ireland and Northern Ireland, who used a website run by a group called Women on Web to get abortion pills. The Netherlands-based nonprofit provides advice and pills to women seeking an early abortion in more than 140 countries where access to abortion is restricted. Ireland and Northern Ireland have some of the world's strictest laws, often only granting approval when a woman's life is at risk.\u003c/p>\n\u003cp>To use the service, women complete an online form, which is reviewed by a doctor. They are sent two drugs in the mail — mifepristone and misoprostol — and given instructions on how to take the pills, which have been used since 1988 to induce early abortions. They are later asked to fill out an evaluation form.\u003c/p>\n\u003cp>About 95 percent of the women in the study reported successfully ending their pregnancy; nearly all were less than nine weeks pregnant at the time of the online consultation. The researchers said less than 10 percent reported symptoms of a potentially serious complication like very heavy bleeding, fever or persistent pain, comparable to the rates for women who seek medical abortions at clinics where abortion is legal. Seven women needed a blood transfusion and 26 received antibiotics. No deaths were reported.\u003c/p>\n\u003cp>Follow-up information was missing for about one-third of the 1,636 women who were sent pills over three years, so some complications may have been missed.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The study was published online last week in the British journal, The BMJ. Women on Web provided the data and the patient feedback for the study; two of the authors are affiliated with the group. In the past decade, the group has helped about 50,000 women have a medical abortion at home.\u003c/p>\n\u003cp>\"We now have evidence that self-sourced medical abortion that's entirely outside the formal health care system can be safe and effective,\" said Dr. Abigail Aiken, an assistant professor at the University of Texas at Austin who led the study. \"Women are very capable of managing their own abortions and they're able to determine themselves when they need to seek medical attention.\"\u003cbr>\nOther experts agreed the study shows how women might be able to safely sidestep restrictive abortion laws.\u003c/p>\n\u003cp>\"This undermines the efficacy of these laws and leaves them unenforceable,\" said Bernard Dickens, a professor emeritus of health law and policy at the University of Toronto, who co-wrote an accompanying commentary. He cited a number of legal loopholes that would make it difficult to prosecute people helping women have an abortion at home.\u003c/p>\n\u003cp>Aiken said the website does not operate in the U.S. but that a telemedicine study of the abortion pill is underway.\u003c/p>\n\u003cp>Linda Kavanath, a spokeswoman for the Abortion Rights Campaign in Ireland, said women should be reassured about the safety of doing a medical abortion on their own, adding that the threat of a 14-year jail sentence in Ireland has had a chilling effect.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"These services will exist until the legislation is changed to grant women access to abortion,\" she said. \"Women will always find a way to have abortions and we're just fortunate that these safe methods now exist.\"\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Medical abortions done at home with online help and pills sent in the mail appear to be just as safe as those done at a clinic, according to a new study.\u003c/p>\n\u003cp>The research tracked the outcomes of 1,000 women in Ireland and Northern Ireland, who used a website run by a group called Women on Web to get abortion pills. The Netherlands-based nonprofit provides advice and pills to women seeking an early abortion in more than 140 countries where access to abortion is restricted. Ireland and Northern Ireland have some of the world's strictest laws, often only granting approval when a woman's life is at risk.\u003c/p>\n\u003cp>To use the service, women complete an online form, which is reviewed by a doctor. They are sent two drugs in the mail — mifepristone and misoprostol — and given instructions on how to take the pills, which have been used since 1988 to induce early abortions. They are later asked to fill out an evaluation form.\u003c/p>\n\u003cp>About 95 percent of the women in the study reported successfully ending their pregnancy; nearly all were less than nine weeks pregnant at the time of the online consultation. The researchers said less than 10 percent reported symptoms of a potentially serious complication like very heavy bleeding, fever or persistent pain, comparable to the rates for women who seek medical abortions at clinics where abortion is legal. Seven women needed a blood transfusion and 26 received antibiotics. No deaths were reported.\u003c/p>\n\u003cp>Follow-up information was missing for about one-third of the 1,636 women who were sent pills over three years, so some complications may have been missed.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The study was published online last week in the British journal, The BMJ. Women on Web provided the data and the patient feedback for the study; two of the authors are affiliated with the group. In the past decade, the group has helped about 50,000 women have a medical abortion at home.\u003c/p>\n\u003cp>\"We now have evidence that self-sourced medical abortion that's entirely outside the formal health care system can be safe and effective,\" said Dr. Abigail Aiken, an assistant professor at the University of Texas at Austin who led the study. \"Women are very capable of managing their own abortions and they're able to determine themselves when they need to seek medical attention.\"\u003cbr>\nOther experts agreed the study shows how women might be able to safely sidestep restrictive abortion laws.\u003c/p>\n\u003cp>\"This undermines the efficacy of these laws and leaves them unenforceable,\" said Bernard Dickens, a professor emeritus of health law and policy at the University of Toronto, who co-wrote an accompanying commentary. He cited a number of legal loopholes that would make it difficult to prosecute people helping women have an abortion at home.\u003c/p>\n\u003cp>Aiken said the website does not operate in the U.S. but that a telemedicine study of the abortion pill is underway.\u003c/p>\n\u003cp>Linda Kavanath, a spokeswoman for the Abortion Rights Campaign in Ireland, said women should be reassured about the safety of doing a medical abortion on their own, adding that the threat of a 14-year jail sentence in Ireland has had a chilling effect.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"These services will exist until the legislation is changed to grant women access to abortion,\" she said. \"Women will always find a way to have abortions and we're just fortunate that these safe methods now exist.\"\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Tech Insiders Call Out Facebook for Literally Manipulating Your Brain",
"title": "Tech Insiders Call Out Facebook for Literally Manipulating Your Brain",
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"content": "\u003cp>In today's world, you'd have to be looking at your phone all the time not to notice that people are looking at their phones all the time.\u003c/p>\n\u003caside class=\"pullquote alignright\">'The tycoons of social media have to stop pretending that they're friendly nerd-gods building a better world, and admit they're just tobacco farmers in t-shirts selling an addictive product to children.'\u003ccite>Bill Maher, on his HBO show\u003c/cite>\u003c/aside>\n\u003cp>Some device owners are so enamored of their digital companions that even \u003ca href=\"https://www.youtube.com/watch?v=fTOZjXjaCaE\" target=\"_blank\" rel=\"noopener noreferrer\">crossing a busy street\u003c/a> doesn't merit a little look-see at the 3-D world. Last year, when it came to \u003ca href=\"//ww2.kqed.org/futureofyou/2016/07/22/the-number-of-accident-reports-related-to-pokemon-go-is-getting-scary/\" target=\"_blank\" rel=\"noopener noreferrer\">playing\u003c/a> Pokémon Go, \u003ca href=\"https://www.youtube.com/watch?time_continue=1&v=KvA9ZgC73vc\" target=\"_blank\" rel=\"nasioopener noopener noreferrer\">driving a car\u003c/a> or \u003ca href=\"http://www.cnn.com/2016/07/15/health/pokemon-go-players-fall-down-cliff/\" target=\"_blank\" rel=\"noopener noreferrer\">walking toward a cliff\u003c/a> didn't rate some people's full attention, either.\u003c/p>\n\u003cp>[contextly_sidebar id=\"uCXUgpDo1aspjSPrtQWwsV2HUIwMUSVL\"]Recently, a former Google \"design ethicist\" named Tristan Harris has been on a crusade of sorts calling out tech companies like Facebook, Google and Apple for using behavioral techniques and neuroscience to keep you compulsively glued to your phone and computer screens.\u003c/p>\n\u003cp>Harris' campaign is starting to get a lot of media attention -- last month, \"60 Minutes\" ran a \u003ca href=\"http://www.cbsnews.com/news/brain-hacking-tech-insiders-60-minutes/\" target=\"_blank\" rel=\"noopener noreferrer\">segment\u003c/a> looking at the issue. That was followed by the comedian and tele-muckraker Bill Maher making it the subject of one of his HBO commentaries.\u003c/p>\n\u003cp>\"The tycoons of social media have to stop pretending that they're friendly nerd-gods building a better world, and admit they're just tobacco farmers in t-shirts selling an addictive product to children,\" Maher opined. \"Because let's face it, checking your 'likes' is the new smoking.\"\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"Apple, Google, Facebook? They are essentially drug dealers.\"\u003c/p>\n\u003cp>Here's Maher's take (replete with his signature politically incorrect raunch):\u003c/p>\n\u003cp>https://www.youtube.com/watch?v=KDqoTDM7tio\u003c/p>\n\u003cp>While the comedian's view may seem over-the-top, KQED's Lesley McClurg recently reported the \u003ca href=\"https://ww2.kqed.org/futureofyou/2017/04/17/theres-growing-consensus-the-internet-is-addictive/\" target=\"_blank\" rel=\"noopener noreferrer\">story\u003c/a> of a middle-school girl who became hooked on watching YouTube, before her parents sent her to to an actual addiction recovery clinic. The cost: $60,000, paid partly from their retirement accounts.\u003c/p>\n\u003cp>In reporting that story, McClurg interviewed Harris, the former Google ethicist. He called the practice of tech companies using scientific techniques that foster compulsivity \"brain hacking.\" Harris now runs a nonprofit called\u003ca href=\"http://www.timewellspent.io/\" target=\"_blank\" rel=\"noopener noreferrer\"> Time Well Spent\u003c/a>, whose home page invites people to \"reclaim our minds from being hijacked by technology.\"\u003c/p>\n\u003cp>https://www.youtube.com/watch?list=PLtLeT9oxQnyqag7AVKQn1-WYUhKAHzj-b&v=tf9ZhU7zF8s\u003c/p>\n\u003cp>Speaking about the current power of Google, Facebook and Apple to command our collective gaze, Harris tells McClurg: \"Never before in history have a handful of technology designers working at three tech companies ... influenced how a billion people spend their attention.\"\u003c/p>\n\u003cp>Harris says that good, ethical design is being trumped by the quest for profit.\u003c/p>\n\u003cp>\"If your company’s goal and your stock price is based on how much attention they get from someone, it’s not really about ethics,\" he says. \"\u003cspan style=\"font-weight: 400\">They just have to do whatever it takes to get attention.\"\u003c/span>\u003c/p>\n\u003cp>And that has created an eyeballs-seeking arms race.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Asking technology companies, asking content creators to be less good at what they do feels like a ridiculous ask.'\u003ccite>Gabe Zichermann, author of 'The Gamification Revolution,' speaking to '60 Minutes'\u003c/cite>\u003c/aside>\n\u003cp>\"After you finish watching a YouTube video,\" Harris notes, \"it auto-plays the next one right away, so you don't have to make a conscious choice. Let's say that creates a 5 percent lift in how much time people spend on YouTube. So Facebook is sitting there watching their traffic get siphoned away, and Facebook says we have to make our videos auto-play, too.\" (Neither Google nor Facebook returned a request for comment.)\u003c/p>\n\u003cp>Facebook, meanwhile, has every incentive to keep you mousing through its news feed so it can sell more ads. Harris says that's one reason the company uses continuous scroll, so that new content will keep opening up as you hit the bottom of the page. But he thinks a more ethical design would be to enable what an individual user wants to do at any given moment.\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">\"Let's say \u003c/span>\u003cspan style=\"font-weight: 400\">your friend texts you that dinner's off,\" he says. \"\u003c/span>\u003cspan style=\"font-weight: 400\">So there you are with \u003c/span>\u003cspan style=\"font-weight: 400\">no plans, and you\u003c/span>\u003cspan style=\"font-weight: 400\"> open up Facebook. A\u003c/span>\u003cspan style=\"font-weight: 400\">t that moment, Facebook has \u003c/span>\u003cspan style=\"font-weight: 400\">about 1,000 people whose job is to get you to just click and scroll and \u003c/span>\u003cspan style=\"font-weight: 400\">watch stuff on the news feed. And that will work. You'll probably end up \u003c/span>\u003cspan style=\"font-weight: 400\">sitting there, an hour later, just kind of having scrolled through the news feed.\"\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">At which point, says Harris, you will have fulfilled Facebook's mission, but perhaps not your own. \u003c/span>\u003c/p>\n\u003caside class=\"pullquote alignright\">'It's not that we \u003cem>shouldn't\u003c/em> be concerned about book burning, but we \u003cem>should\u003c/em> be concerned about a society that distracts us from even wanting to read.' \u003ccite>Tristan Harris, former Google design ethicist\u003c/cite>\u003c/aside>\n\u003cp>But what if Facebook actually asked you what you wanted to do, apart from just using Facebook? Like perhaps finding other people who have no plans?\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">\"It’s about agency,\" says Harris. \"Facebook would have to have some way before you just get dropped in the newsfeed, to say, 'What do you want right now?'\u003c/span>\u003c/p>\n\u003cp>B.J. Fogg runs the Persuasive Technology Lab at Stanford, which teaches students to use these sticky techniques. Many employees of top tech companies, including a cofounder of Instagram, have participated in the lab.\u003c/p>\n\u003cp>Fogg says he got to know some of the early Facebook employees, and found them genuinely motivated by a desire to do good.\u003c/p>\n\u003cp>\"The individual people at Facebook, the people that I met, really wanted to make the world more harmonious, bring people together, create empathy and so on,\" he says.\u003c/p>\n\u003cp>\"Where I think Tristan (Harris) and I would agree a lot is that often their business goals can be at odds with the human-centered approach to design. There's a conflict there between what they need to do as an advertising company and what's going to be really good for people.\"\u003c/p>\n\u003cp>\u003cstrong>Amusing Ourselves to Death\u003c/strong>\u003c/p>\n\u003cp>The reason this matters so much is that technology is going to get more and more persuasive, says Harris.\u003c/p>\n\u003cp>\"We're sitting \u003cspan style=\"font-weight: 400\">at the very edge of what will become a virtual reality and \u003c/span>\u003cspan style=\"font-weight: 400\">augmented reality world. \u003c/span>\u003cspan style=\"font-weight: 400\">If those worlds are e\u003c/span>\u003cspan style=\"font-weight: 400\">ven more persuasive in getting us to spend our time there, where is hum\u003c/span>\u003cspan style=\"font-weight: 400\">an agency in that process?\" \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">And then a warning.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">\"We have to have that conversation now because right now it's \u003c/span>\u003cspan style=\"font-weight: 400\">driving toward not a good direction.\"\u003c/span>\u003c/p>\n\u003caside class=\"pullquote alignright\">'We have now developed a rigorous technology of the human mind, and that is both exciting and terrifying. We have the ability to twiddle some nobs in a machine learning dashboard we build, and around the world hundreds of thousands of people are going to quietly change their behavior ... .'\u003ccite>Ramsay Brown, co-founder, Dopamine Labs\u003c/cite>\u003c/aside>\n\u003cp>He cited a 1985 book, \"\u003ca href=\"https://en.wikipedia.org/wiki/Amusing_Ourselves_to_Death\" target=\"_blank\" rel=\"noopener noreferrer\">Amusing Ourselves to Death\u003c/a>,\" by Neil Postman, that distinguished between two dystopian visions.\u003c/p>\n\u003cp>\"There's one that most people already know: the \"1984\" Big Brother, surveillance future. We have all been trained to look out for that.\u003c/p>\n\u003cp>\"But there is this subtler second vision of power, which was the Aldous Huxley vision in \"\u003ca href=\"https://en.wikipedia.org/wiki/Brave_New_World\" target=\"_blank\" rel=\"noopener noreferrer\">Brave New World\u003c/a>,\" that's so good at giving us amusement and little bits of trivia. In other words, it's not that we \u003cem>shouldn't\u003c/em> be concerned about book burning, but we \u003cem>should\u003c/em> be concerned about a society that distracts us from even wanting to read.\"\u003c/p>\n\u003cp>\u003cstrong>It's the Dopamine\u003c/strong>\u003c/p>\n\u003cp>Ramsay Brown is the co-founder of \u003ca href=\"https://usedopamine.com/\" target=\"_blank\" rel=\"noopener noreferrer\">Dopamine Labs\u003c/a>, which uses artificial intelligence and neuroscience to help app writers attract and retain users.\u003c/p>\n\u003cp>Dopamine Labs makes no bones about what it's trying to do. From a \u003ca href=\"https://usedopamine.com/assets/pdf/Dopamine%20Labs%20Case%20Studies.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">promotional document\u003c/a> on its website.:\u003c/p>\n\u003cblockquote>\u003cp>Keeping users engaged isn’t luck: it’s science. Give users the right \u003ca href=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/burst.jpg\">\u003cimg class=\"alignnone size-full wp-image-392383\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/burst.jpg\" alt=\"\" width=\"71\" height=\"63\">\u003c/a> of dopamine at the right moment and they’ll stay longer and use your app more.\"\u003c/p>\u003c/blockquote>\n\u003cp>Dopamine is a neurotransmitter associated with rewards and addictive substances. The company is not just being glib when it says it will deliver the chemical to users. Dr. Elias Aboujaoude, the director of Stanford’s Obsessive Compulsive Disorder Clinic, told KQED's McClurg that dopamine and other feel-good brain chemicals spike in people who compulsively use the internet.\u003c/p>\n\u003cp>Brown told me that social media companies use a concept known as variable rewards, something that slot machines use to hook gamblers, to similarly keep users clicking.\u003c/p>\n\u003cp>\"The brain isn't particularly craving any one little feel-good signal as much as it does a really good rhythm and pattern,\" Brown said. Both he and Harris say Facebook and Instagram tailor the timing of the \"notifications\" they deliver to users -- the messages you get that are indicated by a number in red at the top right of the screen -- in order to deliver shots of dopamine to users at times determined by an algorithm.\u003c/p>\n\u003cp>\"Sometimes there’s nothing waiting for you, sometimes there’s a friend request or someone wrote on your wall,\" Brown told me. \"Sometimes there’s just kind of like filler crap. It’s not pertinent to your life, but Facebook's algorithms have figured out that showing it to you then is going to be slightly more surprising then not showing it to you at all or showing it to you later.\"\u003c/p>\n\u003cp>These patterns will keep you coming back.\u003c/p>\n\u003cp>I asked Brown how he knew that's what Facebook was doing.\u003c/p>\n\u003cp>\"It's obvious to anyone who knows the techniques,\" he said.\u003c/p>\n\u003cp>https://www.youtube.com/watch?v=gvQxtotEX-M\u003c/p>\n\u003cp>In the \"60 Minutes\" segment, Larry Rosen, a professor of psychology at California State University, Dominguez Hills, who researches the psychology of tech, said typically, people check their phones every 15 minutes or less. They're not just craving dopamine; he said they're seeking relief from the stress hormone cortisol.\u003c/p>\n\u003cp>\"Half of the time, they check their phone, there’s no alert, no notification,\" said Rosen. \"It’s coming from inside their head, telling them, 'Gee I haven’t checked on Facebook for a while, I haven’t checked on this Twitter feed for a while. I wonder if someone commented on my Instagram post. That then generates cortisol and it starts to make you anxious. Eventually your goal is to get rid of that anxiety, so you check in.\"\u003c/p>\n\u003cp>As Anderson Cooper of \"60 Minutes\" put it: \"Their research suggests our phones are keeping us in a continual state of anxiety in which the only antidote is the phone.\"\u003c/p>\n\u003cp>\u003cstrong>Doing Good\u003c/strong>\u003c/p>\n\u003cp>Ramsay Brown says his own company uses this type of research to help only businesses or organizations it has determined are trying to do good.\u003c/p>\n\u003cp>\"To break the habits we don't want in ourselves or make the habits we do want in ourselves,\" as he puts it.\u003c/p>\n\u003cp>To that end, Dopamine Labs created an \u003ca href=\"http://youjustneedspace.com/\" target=\"_blank\" rel=\"noopener noreferrer\">app\u003c/a> called \"Space,\" intended to help users break troublesome online habits by creating a delay before certain apps will open.\u003c/p>\n\u003cp>Apple initially denied the app for placement in its app store. Brown says he was told by an Apple rep that the rejection came because any app that encouraged people to use other apps less was inappropriate for the store. After the \"60 Minutes\" segment aired, Apple \u003ca href=\"https://itunes.apple.com/us/app/space-because-you-need-a-breather/id1187106675?mt=8\" target=\"_blank\" rel=\"noopener noreferrer\">accepted \u003c/a>the app. (An Apple spokesperson said the rejection had to do with a technical issue and that \"The adjustment had nothing to do with whether the app discouraged people from using other apps or not.\")\u003c/p>\n\u003cp>Even though Dopamine Labs might choose clients according to its own definition of doing good, I wondered if the application of techniques that are as powerful and potentially insidious as he and other researchers say they are is justified, no matter what the product.\u003c/p>\n\u003cp>\"We are in a bit of a Robert Oppenheimer moment,\" Brown said, citing the scientist who is often called the father of the atomic bomb, and who later expressed a deep ambivalence about his work\u003cb>.\u003c/b>\u003c/p>\n\u003cp>\"We have now developed a rigorous technology of the human mind, and that is both exciting and terrifying. We have the ability to twiddle some nobs in a machine learning dashboard we build, and around the world hundreds of thousands of people are going to quietly change their behavior in ways that, unbeknownst to them, feel second-nature but are really by design.\"\u003c/p>\n\u003cp>\"Which means that there's a deep ethical imperative for us to use it for good.\"\u003c/p>\n\u003cp>\u003cstrong>So What's the Harm?\u003c/strong>\u003c/p>\n\u003cp>As KQED's McClurg reported, addictions to social media, video games, texting, shopping and pornography are not officially listed disorders in the Diagnostic and Statistical Manual of Mental Disorders. A consensus is growing, however, that compulsive online behavior is doing real harm.\u003c/p>\n\u003cp>Hundreds of papers have been written on the \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/07/06/does-facebook-really-make-you-depressed/\" target=\"_blank\" rel=\"noopener noreferrer\">negative consequences of using Facebook\u003c/a>, alone. While some studies have also shown positive effects, Jean Twenge, a professor of psychology at San Diego State University and the author of \"Generation Me,\" says more rigorous research has come to a more negative conclusion.\u003c/p>\n\u003cp>“Its pretty clear these days that spending more time on social media leads to a\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/28093386\" target=\"_blank\" rel=\"noopener noreferrer\"> more negative mood\u003c/a>,” she said.\u003c/p>\n\u003cp>Twenge says her research shows that the proliferation of the smartphone is having big effects on people born around 1995. She say that's when the millennial generation morphs into \"iGen\" -- also known as \u003ca href=\"https://en.wikipedia.org/wiki/Generation_Z\" target=\"_blank\" rel=\"noopener noreferrer\">Generation Z\u003c/a>.\u003c/p>\n\u003cp>She pointed to the \u003ca href=\"https://www.bls.gov/emp/ep_table_303.htm\" target=\"_blank\" rel=\"noopener noreferrer\">plummeting employment rate of young men\u003c/a> as one macro-development related to iGen, and \u003cspan style=\"font-weight: 400\">cited \u003c/span>the work of University of Chicago economist Erik Hurst. Last year, in a university \u003ca href=\"https://bfi.uchicago.edu/news/scholar-profile/faculty-spotlight-erik-hurst\" target=\"_blank\" rel=\"noopener noreferrer\">profile\u003c/a>, Hurst discussed his research on the dwindling percentage of young males without a college degree in the labor force and this trend's connection to leisure-time technology:\u003c/p>\n\u003cblockquote>\u003cp>In the 2000s, employment rates for this group dropped sharply – more than in any other group. We have determined that, in general, they are not going back to school or switching careers, so what are they doing with their time? The hours that they are not working have been replaced almost one for one with leisure time. Seventy-five percent of this new leisure time falls into one category: video games. The average low-skilled, unemployed man in this group plays video games an average of 12, and sometimes upwards of 30 hours per week. This change marks a relatively major shift that makes me question its effect on their attachment to the labor market.\u003c/p>\u003c/blockquote>\n\u003cp>\u003cstrong>The Attention Economy\u003c/strong>\u003c/p>\n\u003cp>BJ Fogg says a lot of persuasion methods that Facebook and other tech companies use are not really new.\u003c/p>\n\u003cp>He gave the example of Facebook birthday reminders, which often draw people back into the site to wish someone happy birthday. \"Reminders are not new,\" he said, citing Hallmark TV commercials about mother's day, for example. \"W\u003cspan style=\"line-height: 1.5\">hat ‘s different today is that machines are being created to use these techniques.\"\u003c/span>\u003c/p>\n\u003cp>At this point, I am reminded that those of us who create text for public consumption have also been in the business of attention-grabbing for quite some time. This \u003ca href=\"https://ww2.kqed.org/futureofyou/2017/05/12/how-the-media-came-to-embrace-clickbait-an-internet-history/\" target=\"_blank\" rel=\"noopener noreferrer\">excerpt\u003c/a> we recently posted from Tim Wu's book \"The Attention Merchants,\" is instructive; it takes you through the evolution and eventual mainstream adoption of clickbait -- those headlines that contain just the right words to whet your appetite for a click.\u003c/p>\n\u003cp>While we here at KQED have yet to hire a an actual neuroscientist to help us craft the perfect syntactic arrangement to make our post on the \u003ca href=\"https://ww2.kqed.org/science/2017/04/25/volunteer-brown-pelican-count-aims-to-measure-recovery-of-once-endangered-birds/\" target=\"_blank\" rel=\"noopener noreferrer\">California brown pelican count\u003c/a> irresistible to a mass audience, we have sat through any number of workshops led by self-styled audience-whisperers. And we do use software tools to try to figure out what works and what doesn't in terms of getting people to read an article.\u003c/p>\n\u003cp>Isn't that, crudely, \u003cem>some\u003c/em> form of brain hacking?\u003c/p>\n\u003cp>The point being: \u003cem>Everyone\u003c/em> is in quest of your eyeballs. The question is how far will people go to get them. Where the line gets crossed from superior business model to dirty rotten trick is the subject of much debate, from the halls of government to academia to Thanksgiving brouhahas.\u003c/p>\n\u003cp>On the \"60 Minutes\" segment, Gabe Zichermann, who consults for companies on how to use \"\u003ca href=\"https://en.wikipedia.org/wiki/Gamification\" target=\"_blank\" rel=\"noopener noreferrer\">gamification\u003c/a>\" to make their digital products more appealing, argued that attracting audience is simply the name of the game.\u003c/p>\n\u003cp>\"Asking technology companies, asking content creators to be less good at what they do feels like a ridiculous ask,\" he said. \"It feels impossible. And also it’s very anti-capitalistic. This isn’t the system that we live in.\"\u003c/p>\n\u003cp>The other side of that, expressed by Bill Maher in his televised rant:\u003c/p>\n\u003cp>\"The moral rot in this country began when corporate America decided it wasn’t enough to just successfully sell your product; people needed to be addicted to it.”\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>Meantime, while you wait for society to figure this issue out, it's probably best to take matters into your own compulsively typing hands. If you've ever said \"I wish I knew how to quit you\" to your phone, see Lesley McClurg's post, '\u003ca href=\"https://ww2.kqed.org/futureofyou/2016/10/24/help-my-phone-is-ruining-my-life-8-tips-for-the-addicted\" target=\"_blank\" rel=\"noopener noreferrer\">Help! My Phone is Ruining My Life!\u003c/a>' for \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/10/19/help-my-phone-is-ruining-my-life-8-tips-for-the-addicted/#tips\" target=\"_blank\" rel=\"noopener noreferrer\">eight tips\u003c/a> on how to detach.\u003c/p>\n\n",
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"excerpt": "A former Google ethicist is on a crusade to make people aware of what he says are manipulative techniques by tech companies to foster compulsive use of their products. The issue is now getting plenty of media play.",
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"description": "A former Google ethicist is on a crusade to make people aware of what he says are manipulative techniques by tech companies to foster compulsive use of their products. The issue is now getting plenty of media play.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>In today's world, you'd have to be looking at your phone all the time not to notice that people are looking at their phones all the time.\u003c/p>\n\u003caside class=\"pullquote alignright\">'The tycoons of social media have to stop pretending that they're friendly nerd-gods building a better world, and admit they're just tobacco farmers in t-shirts selling an addictive product to children.'\u003ccite>Bill Maher, on his HBO show\u003c/cite>\u003c/aside>\n\u003cp>Some device owners are so enamored of their digital companions that even \u003ca href=\"https://www.youtube.com/watch?v=fTOZjXjaCaE\" target=\"_blank\" rel=\"noopener noreferrer\">crossing a busy street\u003c/a> doesn't merit a little look-see at the 3-D world. Last year, when it came to \u003ca href=\"//ww2.kqed.org/futureofyou/2016/07/22/the-number-of-accident-reports-related-to-pokemon-go-is-getting-scary/\" target=\"_blank\" rel=\"noopener noreferrer\">playing\u003c/a> Pokémon Go, \u003ca href=\"https://www.youtube.com/watch?time_continue=1&v=KvA9ZgC73vc\" target=\"_blank\" rel=\"nasioopener noopener noreferrer\">driving a car\u003c/a> or \u003ca href=\"http://www.cnn.com/2016/07/15/health/pokemon-go-players-fall-down-cliff/\" target=\"_blank\" rel=\"noopener noreferrer\">walking toward a cliff\u003c/a> didn't rate some people's full attention, either.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>Recently, a former Google \"design ethicist\" named Tristan Harris has been on a crusade of sorts calling out tech companies like Facebook, Google and Apple for using behavioral techniques and neuroscience to keep you compulsively glued to your phone and computer screens.\u003c/p>\n\u003cp>Harris' campaign is starting to get a lot of media attention -- last month, \"60 Minutes\" ran a \u003ca href=\"http://www.cbsnews.com/news/brain-hacking-tech-insiders-60-minutes/\" target=\"_blank\" rel=\"noopener noreferrer\">segment\u003c/a> looking at the issue. That was followed by the comedian and tele-muckraker Bill Maher making it the subject of one of his HBO commentaries.\u003c/p>\n\u003cp>\"The tycoons of social media have to stop pretending that they're friendly nerd-gods building a better world, and admit they're just tobacco farmers in t-shirts selling an addictive product to children,\" Maher opined. \"Because let's face it, checking your 'likes' is the new smoking.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"Apple, Google, Facebook? They are essentially drug dealers.\"\u003c/p>\n\u003cp>Here's Maher's take (replete with his signature politically incorrect raunch):\u003c/p>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/KDqoTDM7tio'\n title='//www.youtube.com/embed/KDqoTDM7tio'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>While the comedian's view may seem over-the-top, KQED's Lesley McClurg recently reported the \u003ca href=\"https://ww2.kqed.org/futureofyou/2017/04/17/theres-growing-consensus-the-internet-is-addictive/\" target=\"_blank\" rel=\"noopener noreferrer\">story\u003c/a> of a middle-school girl who became hooked on watching YouTube, before her parents sent her to to an actual addiction recovery clinic. The cost: $60,000, paid partly from their retirement accounts.\u003c/p>\n\u003cp>In reporting that story, McClurg interviewed Harris, the former Google ethicist. He called the practice of tech companies using scientific techniques that foster compulsivity \"brain hacking.\" Harris now runs a nonprofit called\u003ca href=\"http://www.timewellspent.io/\" target=\"_blank\" rel=\"noopener noreferrer\"> Time Well Spent\u003c/a>, whose home page invites people to \"reclaim our minds from being hijacked by technology.\"\u003c/p>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/tf9ZhU7zF8s'\n title='//www.youtube.com/embed/tf9ZhU7zF8s'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>Speaking about the current power of Google, Facebook and Apple to command our collective gaze, Harris tells McClurg: \"Never before in history have a handful of technology designers working at three tech companies ... influenced how a billion people spend their attention.\"\u003c/p>\n\u003cp>Harris says that good, ethical design is being trumped by the quest for profit.\u003c/p>\n\u003cp>\"If your company’s goal and your stock price is based on how much attention they get from someone, it’s not really about ethics,\" he says. \"\u003cspan style=\"font-weight: 400\">They just have to do whatever it takes to get attention.\"\u003c/span>\u003c/p>\n\u003cp>And that has created an eyeballs-seeking arms race.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Asking technology companies, asking content creators to be less good at what they do feels like a ridiculous ask.'\u003ccite>Gabe Zichermann, author of 'The Gamification Revolution,' speaking to '60 Minutes'\u003c/cite>\u003c/aside>\n\u003cp>\"After you finish watching a YouTube video,\" Harris notes, \"it auto-plays the next one right away, so you don't have to make a conscious choice. Let's say that creates a 5 percent lift in how much time people spend on YouTube. So Facebook is sitting there watching their traffic get siphoned away, and Facebook says we have to make our videos auto-play, too.\" (Neither Google nor Facebook returned a request for comment.)\u003c/p>\n\u003cp>Facebook, meanwhile, has every incentive to keep you mousing through its news feed so it can sell more ads. Harris says that's one reason the company uses continuous scroll, so that new content will keep opening up as you hit the bottom of the page. But he thinks a more ethical design would be to enable what an individual user wants to do at any given moment.\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">\"Let's say \u003c/span>\u003cspan style=\"font-weight: 400\">your friend texts you that dinner's off,\" he says. \"\u003c/span>\u003cspan style=\"font-weight: 400\">So there you are with \u003c/span>\u003cspan style=\"font-weight: 400\">no plans, and you\u003c/span>\u003cspan style=\"font-weight: 400\"> open up Facebook. A\u003c/span>\u003cspan style=\"font-weight: 400\">t that moment, Facebook has \u003c/span>\u003cspan style=\"font-weight: 400\">about 1,000 people whose job is to get you to just click and scroll and \u003c/span>\u003cspan style=\"font-weight: 400\">watch stuff on the news feed. And that will work. You'll probably end up \u003c/span>\u003cspan style=\"font-weight: 400\">sitting there, an hour later, just kind of having scrolled through the news feed.\"\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">At which point, says Harris, you will have fulfilled Facebook's mission, but perhaps not your own. \u003c/span>\u003c/p>\n\u003caside class=\"pullquote alignright\">'It's not that we \u003cem>shouldn't\u003c/em> be concerned about book burning, but we \u003cem>should\u003c/em> be concerned about a society that distracts us from even wanting to read.' \u003ccite>Tristan Harris, former Google design ethicist\u003c/cite>\u003c/aside>\n\u003cp>But what if Facebook actually asked you what you wanted to do, apart from just using Facebook? Like perhaps finding other people who have no plans?\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">\"It’s about agency,\" says Harris. \"Facebook would have to have some way before you just get dropped in the newsfeed, to say, 'What do you want right now?'\u003c/span>\u003c/p>\n\u003cp>B.J. Fogg runs the Persuasive Technology Lab at Stanford, which teaches students to use these sticky techniques. Many employees of top tech companies, including a cofounder of Instagram, have participated in the lab.\u003c/p>\n\u003cp>Fogg says he got to know some of the early Facebook employees, and found them genuinely motivated by a desire to do good.\u003c/p>\n\u003cp>\"The individual people at Facebook, the people that I met, really wanted to make the world more harmonious, bring people together, create empathy and so on,\" he says.\u003c/p>\n\u003cp>\"Where I think Tristan (Harris) and I would agree a lot is that often their business goals can be at odds with the human-centered approach to design. There's a conflict there between what they need to do as an advertising company and what's going to be really good for people.\"\u003c/p>\n\u003cp>\u003cstrong>Amusing Ourselves to Death\u003c/strong>\u003c/p>\n\u003cp>The reason this matters so much is that technology is going to get more and more persuasive, says Harris.\u003c/p>\n\u003cp>\"We're sitting \u003cspan style=\"font-weight: 400\">at the very edge of what will become a virtual reality and \u003c/span>\u003cspan style=\"font-weight: 400\">augmented reality world. \u003c/span>\u003cspan style=\"font-weight: 400\">If those worlds are e\u003c/span>\u003cspan style=\"font-weight: 400\">ven more persuasive in getting us to spend our time there, where is hum\u003c/span>\u003cspan style=\"font-weight: 400\">an agency in that process?\" \u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">And then a warning.\u003c/span>\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">\"We have to have that conversation now because right now it's \u003c/span>\u003cspan style=\"font-weight: 400\">driving toward not a good direction.\"\u003c/span>\u003c/p>\n\u003caside class=\"pullquote alignright\">'We have now developed a rigorous technology of the human mind, and that is both exciting and terrifying. We have the ability to twiddle some nobs in a machine learning dashboard we build, and around the world hundreds of thousands of people are going to quietly change their behavior ... .'\u003ccite>Ramsay Brown, co-founder, Dopamine Labs\u003c/cite>\u003c/aside>\n\u003cp>He cited a 1985 book, \"\u003ca href=\"https://en.wikipedia.org/wiki/Amusing_Ourselves_to_Death\" target=\"_blank\" rel=\"noopener noreferrer\">Amusing Ourselves to Death\u003c/a>,\" by Neil Postman, that distinguished between two dystopian visions.\u003c/p>\n\u003cp>\"There's one that most people already know: the \"1984\" Big Brother, surveillance future. We have all been trained to look out for that.\u003c/p>\n\u003cp>\"But there is this subtler second vision of power, which was the Aldous Huxley vision in \"\u003ca href=\"https://en.wikipedia.org/wiki/Brave_New_World\" target=\"_blank\" rel=\"noopener noreferrer\">Brave New World\u003c/a>,\" that's so good at giving us amusement and little bits of trivia. In other words, it's not that we \u003cem>shouldn't\u003c/em> be concerned about book burning, but we \u003cem>should\u003c/em> be concerned about a society that distracts us from even wanting to read.\"\u003c/p>\n\u003cp>\u003cstrong>It's the Dopamine\u003c/strong>\u003c/p>\n\u003cp>Ramsay Brown is the co-founder of \u003ca href=\"https://usedopamine.com/\" target=\"_blank\" rel=\"noopener noreferrer\">Dopamine Labs\u003c/a>, which uses artificial intelligence and neuroscience to help app writers attract and retain users.\u003c/p>\n\u003cp>Dopamine Labs makes no bones about what it's trying to do. From a \u003ca href=\"https://usedopamine.com/assets/pdf/Dopamine%20Labs%20Case%20Studies.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">promotional document\u003c/a> on its website.:\u003c/p>\n\u003cblockquote>\u003cp>Keeping users engaged isn’t luck: it’s science. Give users the right \u003ca href=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/burst.jpg\">\u003cimg class=\"alignnone size-full wp-image-392383\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/burst.jpg\" alt=\"\" width=\"71\" height=\"63\">\u003c/a> of dopamine at the right moment and they’ll stay longer and use your app more.\"\u003c/p>\u003c/blockquote>\n\u003cp>Dopamine is a neurotransmitter associated with rewards and addictive substances. The company is not just being glib when it says it will deliver the chemical to users. Dr. Elias Aboujaoude, the director of Stanford’s Obsessive Compulsive Disorder Clinic, told KQED's McClurg that dopamine and other feel-good brain chemicals spike in people who compulsively use the internet.\u003c/p>\n\u003cp>Brown told me that social media companies use a concept known as variable rewards, something that slot machines use to hook gamblers, to similarly keep users clicking.\u003c/p>\n\u003cp>\"The brain isn't particularly craving any one little feel-good signal as much as it does a really good rhythm and pattern,\" Brown said. Both he and Harris say Facebook and Instagram tailor the timing of the \"notifications\" they deliver to users -- the messages you get that are indicated by a number in red at the top right of the screen -- in order to deliver shots of dopamine to users at times determined by an algorithm.\u003c/p>\n\u003cp>\"Sometimes there’s nothing waiting for you, sometimes there’s a friend request or someone wrote on your wall,\" Brown told me. \"Sometimes there’s just kind of like filler crap. It’s not pertinent to your life, but Facebook's algorithms have figured out that showing it to you then is going to be slightly more surprising then not showing it to you at all or showing it to you later.\"\u003c/p>\n\u003cp>These patterns will keep you coming back.\u003c/p>\n\u003cp>I asked Brown how he knew that's what Facebook was doing.\u003c/p>\n\u003cp>\"It's obvious to anyone who knows the techniques,\" he said.\u003c/p>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/gvQxtotEX-M'\n title='//www.youtube.com/embed/gvQxtotEX-M'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>In the \"60 Minutes\" segment, Larry Rosen, a professor of psychology at California State University, Dominguez Hills, who researches the psychology of tech, said typically, people check their phones every 15 minutes or less. They're not just craving dopamine; he said they're seeking relief from the stress hormone cortisol.\u003c/p>\n\u003cp>\"Half of the time, they check their phone, there’s no alert, no notification,\" said Rosen. \"It’s coming from inside their head, telling them, 'Gee I haven’t checked on Facebook for a while, I haven’t checked on this Twitter feed for a while. I wonder if someone commented on my Instagram post. That then generates cortisol and it starts to make you anxious. Eventually your goal is to get rid of that anxiety, so you check in.\"\u003c/p>\n\u003cp>As Anderson Cooper of \"60 Minutes\" put it: \"Their research suggests our phones are keeping us in a continual state of anxiety in which the only antidote is the phone.\"\u003c/p>\n\u003cp>\u003cstrong>Doing Good\u003c/strong>\u003c/p>\n\u003cp>Ramsay Brown says his own company uses this type of research to help only businesses or organizations it has determined are trying to do good.\u003c/p>\n\u003cp>\"To break the habits we don't want in ourselves or make the habits we do want in ourselves,\" as he puts it.\u003c/p>\n\u003cp>To that end, Dopamine Labs created an \u003ca href=\"http://youjustneedspace.com/\" target=\"_blank\" rel=\"noopener noreferrer\">app\u003c/a> called \"Space,\" intended to help users break troublesome online habits by creating a delay before certain apps will open.\u003c/p>\n\u003cp>Apple initially denied the app for placement in its app store. Brown says he was told by an Apple rep that the rejection came because any app that encouraged people to use other apps less was inappropriate for the store. After the \"60 Minutes\" segment aired, Apple \u003ca href=\"https://itunes.apple.com/us/app/space-because-you-need-a-breather/id1187106675?mt=8\" target=\"_blank\" rel=\"noopener noreferrer\">accepted \u003c/a>the app. (An Apple spokesperson said the rejection had to do with a technical issue and that \"The adjustment had nothing to do with whether the app discouraged people from using other apps or not.\")\u003c/p>\n\u003cp>Even though Dopamine Labs might choose clients according to its own definition of doing good, I wondered if the application of techniques that are as powerful and potentially insidious as he and other researchers say they are is justified, no matter what the product.\u003c/p>\n\u003cp>\"We are in a bit of a Robert Oppenheimer moment,\" Brown said, citing the scientist who is often called the father of the atomic bomb, and who later expressed a deep ambivalence about his work\u003cb>.\u003c/b>\u003c/p>\n\u003cp>\"We have now developed a rigorous technology of the human mind, and that is both exciting and terrifying. We have the ability to twiddle some nobs in a machine learning dashboard we build, and around the world hundreds of thousands of people are going to quietly change their behavior in ways that, unbeknownst to them, feel second-nature but are really by design.\"\u003c/p>\n\u003cp>\"Which means that there's a deep ethical imperative for us to use it for good.\"\u003c/p>\n\u003cp>\u003cstrong>So What's the Harm?\u003c/strong>\u003c/p>\n\u003cp>As KQED's McClurg reported, addictions to social media, video games, texting, shopping and pornography are not officially listed disorders in the Diagnostic and Statistical Manual of Mental Disorders. A consensus is growing, however, that compulsive online behavior is doing real harm.\u003c/p>\n\u003cp>Hundreds of papers have been written on the \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/07/06/does-facebook-really-make-you-depressed/\" target=\"_blank\" rel=\"noopener noreferrer\">negative consequences of using Facebook\u003c/a>, alone. While some studies have also shown positive effects, Jean Twenge, a professor of psychology at San Diego State University and the author of \"Generation Me,\" says more rigorous research has come to a more negative conclusion.\u003c/p>\n\u003cp>“Its pretty clear these days that spending more time on social media leads to a\u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/28093386\" target=\"_blank\" rel=\"noopener noreferrer\"> more negative mood\u003c/a>,” she said.\u003c/p>\n\u003cp>Twenge says her research shows that the proliferation of the smartphone is having big effects on people born around 1995. She say that's when the millennial generation morphs into \"iGen\" -- also known as \u003ca href=\"https://en.wikipedia.org/wiki/Generation_Z\" target=\"_blank\" rel=\"noopener noreferrer\">Generation Z\u003c/a>.\u003c/p>\n\u003cp>She pointed to the \u003ca href=\"https://www.bls.gov/emp/ep_table_303.htm\" target=\"_blank\" rel=\"noopener noreferrer\">plummeting employment rate of young men\u003c/a> as one macro-development related to iGen, and \u003cspan style=\"font-weight: 400\">cited \u003c/span>the work of University of Chicago economist Erik Hurst. Last year, in a university \u003ca href=\"https://bfi.uchicago.edu/news/scholar-profile/faculty-spotlight-erik-hurst\" target=\"_blank\" rel=\"noopener noreferrer\">profile\u003c/a>, Hurst discussed his research on the dwindling percentage of young males without a college degree in the labor force and this trend's connection to leisure-time technology:\u003c/p>\n\u003cblockquote>\u003cp>In the 2000s, employment rates for this group dropped sharply – more than in any other group. We have determined that, in general, they are not going back to school or switching careers, so what are they doing with their time? The hours that they are not working have been replaced almost one for one with leisure time. Seventy-five percent of this new leisure time falls into one category: video games. The average low-skilled, unemployed man in this group plays video games an average of 12, and sometimes upwards of 30 hours per week. This change marks a relatively major shift that makes me question its effect on their attachment to the labor market.\u003c/p>\u003c/blockquote>\n\u003cp>\u003cstrong>The Attention Economy\u003c/strong>\u003c/p>\n\u003cp>BJ Fogg says a lot of persuasion methods that Facebook and other tech companies use are not really new.\u003c/p>\n\u003cp>He gave the example of Facebook birthday reminders, which often draw people back into the site to wish someone happy birthday. \"Reminders are not new,\" he said, citing Hallmark TV commercials about mother's day, for example. \"W\u003cspan style=\"line-height: 1.5\">hat ‘s different today is that machines are being created to use these techniques.\"\u003c/span>\u003c/p>\n\u003cp>At this point, I am reminded that those of us who create text for public consumption have also been in the business of attention-grabbing for quite some time. This \u003ca href=\"https://ww2.kqed.org/futureofyou/2017/05/12/how-the-media-came-to-embrace-clickbait-an-internet-history/\" target=\"_blank\" rel=\"noopener noreferrer\">excerpt\u003c/a> we recently posted from Tim Wu's book \"The Attention Merchants,\" is instructive; it takes you through the evolution and eventual mainstream adoption of clickbait -- those headlines that contain just the right words to whet your appetite for a click.\u003c/p>\n\u003cp>While we here at KQED have yet to hire a an actual neuroscientist to help us craft the perfect syntactic arrangement to make our post on the \u003ca href=\"https://ww2.kqed.org/science/2017/04/25/volunteer-brown-pelican-count-aims-to-measure-recovery-of-once-endangered-birds/\" target=\"_blank\" rel=\"noopener noreferrer\">California brown pelican count\u003c/a> irresistible to a mass audience, we have sat through any number of workshops led by self-styled audience-whisperers. And we do use software tools to try to figure out what works and what doesn't in terms of getting people to read an article.\u003c/p>\n\u003cp>Isn't that, crudely, \u003cem>some\u003c/em> form of brain hacking?\u003c/p>\n\u003cp>The point being: \u003cem>Everyone\u003c/em> is in quest of your eyeballs. The question is how far will people go to get them. Where the line gets crossed from superior business model to dirty rotten trick is the subject of much debate, from the halls of government to academia to Thanksgiving brouhahas.\u003c/p>\n\u003cp>On the \"60 Minutes\" segment, Gabe Zichermann, who consults for companies on how to use \"\u003ca href=\"https://en.wikipedia.org/wiki/Gamification\" target=\"_blank\" rel=\"noopener noreferrer\">gamification\u003c/a>\" to make their digital products more appealing, argued that attracting audience is simply the name of the game.\u003c/p>\n\u003cp>\"Asking technology companies, asking content creators to be less good at what they do feels like a ridiculous ask,\" he said. \"It feels impossible. And also it’s very anti-capitalistic. This isn’t the system that we live in.\"\u003c/p>\n\u003cp>The other side of that, expressed by Bill Maher in his televised rant:\u003c/p>\n\u003cp>\"The moral rot in this country began when corporate America decided it wasn’t enough to just successfully sell your product; people needed to be addicted to it.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Meantime, while you wait for society to figure this issue out, it's probably best to take matters into your own compulsively typing hands. If you've ever said \"I wish I knew how to quit you\" to your phone, see Lesley McClurg's post, '\u003ca href=\"https://ww2.kqed.org/futureofyou/2016/10/24/help-my-phone-is-ruining-my-life-8-tips-for-the-addicted\" target=\"_blank\" rel=\"noopener noreferrer\">Help! My Phone is Ruining My Life!\u003c/a>' for \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/10/19/help-my-phone-is-ruining-my-life-8-tips-for-the-addicted/#tips\" target=\"_blank\" rel=\"noopener noreferrer\">eight tips\u003c/a> on how to detach.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Why is Your Teenager Acting So Weird? Let a Neurobiologist Explain",
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"content": "\u003cp>As far as the brain is concerned, the teenage years are a world unto themselves.\u003c/p>\n\u003cp>As an eminent neurobiologist and single mother of two teenaged boys, \u003ca href=\"http://www.med.upenn.edu/apps/faculty/index.php/g324/p8577612\" target=\"_blank\" rel=\"noopener noreferrer\">Dr. Frances Jensen\u003c/a> had a front-row seat to the seemingly contradictory behavior that would allow her sons to ace a test at school yet still make lapses in judgment no sensible adult would. She wrote about these experiences, and the underlying biology that led to them, in her new book, co-authored with science journalist Amy Ellis Nutt, \"\u003ca href=\"https://www.harpercollins.com/9780062067869/the-teenage-brain\" target=\"_blank\" rel=\"noopener noreferrer\">The Teenage Brain: A Neuroscientist’s Survival Guide to Raising Adolescents and Young Adults\u003c/a>.\"\u003c/p>\n\u003cp>The contradictions Jensen observed occur in part because our brains do not fully mature until we are in our mid- to late-20s, when the frontal lobe, which controls decision-making and risk-taking, develops.\u003c/p>\n\u003cp>Jensen recently spoke with Michael Krasny, the host of \u003ca href=\"https://ww2.kqed.org/forum/2017/05/12/neuroscientist-explores-the-contradictions-of-the-teen-brain/\" target=\"_blank\" rel=\"noopener noreferrer\">KQED's Forum radio show\u003c/a>, to explain how parents can better understand the biochemical imperatives that make their teens and young adults so emotional and unpredictable, as well as leaving them more vulnerable to addiction and mental disorders.\u003c/p>\n\u003cp>Here are some excerpts from Jensen's answers on the show, edited for length and readability.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cstrong>On the Unpredictable Behavior of Teens\u003c/strong>\u003c/p>\n\u003cp>Teenagers do have frontal lobes, which are the seat of our executive, adult-like functioning like impulse control, judgment and empathy. But the frontal lobes haven’t been connected with fast-acting connections yet. The brain actually connects regions from the back of the brain to the front, so the last place to have these fast-acting connections is the frontal lobe.\u003c/p>\n\u003cp>But there is another part of the brain that is fully active in adolescents, and that’s the limbic system. And that is the seat of risk, reward, impulsivity, sexual behavior and emotion.\u003c/p>\n\u003cp>So they are built to be novelty-seeking at this point in their lives. Their frontal lobe isn’t able to say, \"That’s a bad idea, don’t do that.\" That’s not happening to the extent it will in adulthood.\u003c/p>\n\u003caside class=\"pullquote alignright\">'They’re really like Ferraris with weak brakes.’\u003ccite>Neuroscientist Frances Jensen\u003c/cite>\u003c/aside>\n\u003cp>But while that is a weakness, there are strengths of the adolescent brain. Each region of the brain is more active in childhood and adolescence than it will be later in life. They are faster learners, they can build synapses faster.\u003c/p>\n\u003cp>They’re really like Ferraris with weak brakes. They’re learning machines, but they can learn good and bad things.\u003c/p>\n\u003cp>\u003cstrong>Teens' Extreme Emotional Reactions\u003c/strong>\u003c/p>\n\u003cp>Why do they react like it’s an international incident when it’s something you consider a completely innocuous event?\u003c/p>\n\u003cp>Functional imaging studies have looked at children, adolescents and adults who are given the same emotional stressor, and the adolescents will light up the emotional center \u003cem>— \u003c/em>the limbic system \u003cem>— \u003c/em>twice as high as children or adults. So they are uniquely experiencing whatever it is as an international incident.\u003c/p>\n\u003cp>I think we need to remind ourselves that they’re experiencing emotion in Technicolor, whereas we’re experiencing it in black and white. And it makes you understand a bit more why they behave the way they do. Maybe you can count to 10 and not react. Back off and reapproach in a more organized way.\u003c/p>\n\u003cp>\u003cstrong>Teens’ Vulnerability to Addiction\u003c/strong>\u003c/p>\n\u003cp>Cannabis decreases your cells’ ability to build synapses, which you need for learning. And there’s more substrate for the drug to bind to. So for the same dose, it’s hanging around in teen brains to a greater extent \u003cem>— i\u003c/em>t might be around for four days in the brain.\u003c/p>\n\u003cp>Now that’s on a single-dose basis. And what’s quite concerning is the literature that’s starting to come out about chronic, daily cannabis use. That’s what we’re really concerned about. And there are some concerning studies that say your IQ’s going to drop permanently if you are exposed to chronic, daily cannabis through this adolescent window.\u003c/p>\n\u003cp>We need to think of this window as a very precious window. You need to mind your brain at this stage of your life, and it will mind you later… that’s what I tell adolescents when I am talking to them.\u003c/p>\n\u003caside class=\"pullquote alignright\">'They are really playing with fire – the schoolyard pranks of yesteryear that are not the same anymore.’\u003c/aside>\n\u003cp>More and more studies are being done, now that it has been realized that the adolescent brain is a specific brain stage. I think parents should make it their business to stay on top of what this research is showing. Your kids are \u003cem>so\u003c/em> not going to do what you say just because you tell them to do it… and if you have a few facts in hand, it can help to make you somewhat more credible.\u003c/p>\n\u003cp>\u003cstrong>The Impacts of Social Media \u003c/strong>\u003c/p>\n\u003cp>The building of the teenaged brain hasn’t changed in eons, but what has changed is the environment around our teens. Right now they’re being bombarded by an unprecedented amount of information. And they’re novelty-seeking. And where else are they going to get novelty? It’s all over the internet. We should have a conversation about the age-inappropriate things they can find on the internet, things that might cause stress. And the effects of social media: How does it feed peer pressure behavior?\u003c/p>\n\u003cp>It’s really a whole new day and they are really playing with fire -– the schoolyard pranks of yesteryear that are not the same anymore.\u003c/p>\n\u003cp>[contextly_sidebar id=\"a3eifBuzpKzoQPGGSSv1l7enHth4vOZL\"]Teens are better learners, and stressful things will stay in their brains longer. There’s a conversation we have to have with them: How do you gate yourself with social media? Life is about trial and error, and there needs to be an opportunity for them to rehearse mistakes, including mistakes in the social media domain, before they make them themselves.\u003c/p>\n\u003cp>There’s a way to guide your child to make decisions independently rather than helicoptering over them.\u003c/p>\n\u003cp>\u003cstrong>On How 'Real' Teenage Love Is \u003c/strong>\u003c/p>\n\u003cp>It feels very real to the person in that moment. It’s bona fide emotion; it’s just not emotion that’s measured like it will be later in life, where you might say, ‘I’m attracted to this person, but there’s a lot of reasons why this may not be.’ It’s real but just feels unbridled. Teens have superheated limbic systems, so the emotional areas, the sexual incentive areas, are on.\u003c/p>\n\u003cp>\u003cstrong>When Medication is Appropriate \u003c/strong>\u003c/p>\n\u003cp>The onset of mental illness occurs in late teens, early adolescence. Schizophrenia, bipolar, depression, psychosis; they come in this window. And the reason for this is developmental. You need to have your prefrontal cortices at least partially connected in order to have the manifestation of these diseases that you might already have as a genetic predisposition. It’s a biological event.\u003c/p>\n\u003cp>We need to be aware that one in four people in our society have some form of mental illness, ranging from very mild anxiety to a major affective disorder. And 60 to 80 percent of these people are seeing this happen between the ages of 16 and 26. That is a fact. We need to keep our antennae up to determine: Is this just a moody kid? Or is this mental illness? As a parent, if you think your child is not taking an interest in their appearance, losing their appetite, really becoming more isolated, you need to make sure you’re part of your teen’s life and probe what’s going on.\u003c/p>\n\u003cp>\u003cem>Dr. Frances Jensen on the teenage brain, in 2015\u003c/em>:\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>https://www.youtube.com/watch?v=f9sQNGvveXs&feature=youtu.be&ab_channel=PoliticsandProse\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>As far as the brain is concerned, the teenage years are a world unto themselves.\u003c/p>\n\u003cp>As an eminent neurobiologist and single mother of two teenaged boys, \u003ca href=\"http://www.med.upenn.edu/apps/faculty/index.php/g324/p8577612\" target=\"_blank\" rel=\"noopener noreferrer\">Dr. Frances Jensen\u003c/a> had a front-row seat to the seemingly contradictory behavior that would allow her sons to ace a test at school yet still make lapses in judgment no sensible adult would. She wrote about these experiences, and the underlying biology that led to them, in her new book, co-authored with science journalist Amy Ellis Nutt, \"\u003ca href=\"https://www.harpercollins.com/9780062067869/the-teenage-brain\" target=\"_blank\" rel=\"noopener noreferrer\">The Teenage Brain: A Neuroscientist’s Survival Guide to Raising Adolescents and Young Adults\u003c/a>.\"\u003c/p>\n\u003cp>The contradictions Jensen observed occur in part because our brains do not fully mature until we are in our mid- to late-20s, when the frontal lobe, which controls decision-making and risk-taking, develops.\u003c/p>\n\u003cp>Jensen recently spoke with Michael Krasny, the host of \u003ca href=\"https://ww2.kqed.org/forum/2017/05/12/neuroscientist-explores-the-contradictions-of-the-teen-brain/\" target=\"_blank\" rel=\"noopener noreferrer\">KQED's Forum radio show\u003c/a>, to explain how parents can better understand the biochemical imperatives that make their teens and young adults so emotional and unpredictable, as well as leaving them more vulnerable to addiction and mental disorders.\u003c/p>\n\u003cp>Here are some excerpts from Jensen's answers on the show, edited for length and readability.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>On the Unpredictable Behavior of Teens\u003c/strong>\u003c/p>\n\u003cp>Teenagers do have frontal lobes, which are the seat of our executive, adult-like functioning like impulse control, judgment and empathy. But the frontal lobes haven’t been connected with fast-acting connections yet. The brain actually connects regions from the back of the brain to the front, so the last place to have these fast-acting connections is the frontal lobe.\u003c/p>\n\u003cp>But there is another part of the brain that is fully active in adolescents, and that’s the limbic system. And that is the seat of risk, reward, impulsivity, sexual behavior and emotion.\u003c/p>\n\u003cp>So they are built to be novelty-seeking at this point in their lives. Their frontal lobe isn’t able to say, \"That’s a bad idea, don’t do that.\" That’s not happening to the extent it will in adulthood.\u003c/p>\n\u003caside class=\"pullquote alignright\">'They’re really like Ferraris with weak brakes.’\u003ccite>Neuroscientist Frances Jensen\u003c/cite>\u003c/aside>\n\u003cp>But while that is a weakness, there are strengths of the adolescent brain. Each region of the brain is more active in childhood and adolescence than it will be later in life. They are faster learners, they can build synapses faster.\u003c/p>\n\u003cp>They’re really like Ferraris with weak brakes. They’re learning machines, but they can learn good and bad things.\u003c/p>\n\u003cp>\u003cstrong>Teens' Extreme Emotional Reactions\u003c/strong>\u003c/p>\n\u003cp>Why do they react like it’s an international incident when it’s something you consider a completely innocuous event?\u003c/p>\n\u003cp>Functional imaging studies have looked at children, adolescents and adults who are given the same emotional stressor, and the adolescents will light up the emotional center \u003cem>— \u003c/em>the limbic system \u003cem>— \u003c/em>twice as high as children or adults. So they are uniquely experiencing whatever it is as an international incident.\u003c/p>\n\u003cp>I think we need to remind ourselves that they’re experiencing emotion in Technicolor, whereas we’re experiencing it in black and white. And it makes you understand a bit more why they behave the way they do. Maybe you can count to 10 and not react. Back off and reapproach in a more organized way.\u003c/p>\n\u003cp>\u003cstrong>Teens’ Vulnerability to Addiction\u003c/strong>\u003c/p>\n\u003cp>Cannabis decreases your cells’ ability to build synapses, which you need for learning. And there’s more substrate for the drug to bind to. So for the same dose, it’s hanging around in teen brains to a greater extent \u003cem>— i\u003c/em>t might be around for four days in the brain.\u003c/p>\n\u003cp>Now that’s on a single-dose basis. And what’s quite concerning is the literature that’s starting to come out about chronic, daily cannabis use. That’s what we’re really concerned about. And there are some concerning studies that say your IQ’s going to drop permanently if you are exposed to chronic, daily cannabis through this adolescent window.\u003c/p>\n\u003cp>We need to think of this window as a very precious window. You need to mind your brain at this stage of your life, and it will mind you later… that’s what I tell adolescents when I am talking to them.\u003c/p>\n\u003caside class=\"pullquote alignright\">'They are really playing with fire – the schoolyard pranks of yesteryear that are not the same anymore.’\u003c/aside>\n\u003cp>More and more studies are being done, now that it has been realized that the adolescent brain is a specific brain stage. I think parents should make it their business to stay on top of what this research is showing. Your kids are \u003cem>so\u003c/em> not going to do what you say just because you tell them to do it… and if you have a few facts in hand, it can help to make you somewhat more credible.\u003c/p>\n\u003cp>\u003cstrong>The Impacts of Social Media \u003c/strong>\u003c/p>\n\u003cp>The building of the teenaged brain hasn’t changed in eons, but what has changed is the environment around our teens. Right now they’re being bombarded by an unprecedented amount of information. And they’re novelty-seeking. And where else are they going to get novelty? It’s all over the internet. We should have a conversation about the age-inappropriate things they can find on the internet, things that might cause stress. And the effects of social media: How does it feed peer pressure behavior?\u003c/p>\n\u003cp>It’s really a whole new day and they are really playing with fire -– the schoolyard pranks of yesteryear that are not the same anymore.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>Teens are better learners, and stressful things will stay in their brains longer. There’s a conversation we have to have with them: How do you gate yourself with social media? Life is about trial and error, and there needs to be an opportunity for them to rehearse mistakes, including mistakes in the social media domain, before they make them themselves.\u003c/p>\n\u003cp>There’s a way to guide your child to make decisions independently rather than helicoptering over them.\u003c/p>\n\u003cp>\u003cstrong>On How 'Real' Teenage Love Is \u003c/strong>\u003c/p>\n\u003cp>It feels very real to the person in that moment. It’s bona fide emotion; it’s just not emotion that’s measured like it will be later in life, where you might say, ‘I’m attracted to this person, but there’s a lot of reasons why this may not be.’ It’s real but just feels unbridled. Teens have superheated limbic systems, so the emotional areas, the sexual incentive areas, are on.\u003c/p>\n\u003cp>\u003cstrong>When Medication is Appropriate \u003c/strong>\u003c/p>\n\u003cp>The onset of mental illness occurs in late teens, early adolescence. Schizophrenia, bipolar, depression, psychosis; they come in this window. And the reason for this is developmental. You need to have your prefrontal cortices at least partially connected in order to have the manifestation of these diseases that you might already have as a genetic predisposition. It’s a biological event.\u003c/p>\n\u003cp>We need to be aware that one in four people in our society have some form of mental illness, ranging from very mild anxiety to a major affective disorder. And 60 to 80 percent of these people are seeing this happen between the ages of 16 and 26. That is a fact. We need to keep our antennae up to determine: Is this just a moody kid? Or is this mental illness? As a parent, if you think your child is not taking an interest in their appearance, losing their appetite, really becoming more isolated, you need to make sure you’re part of your teen’s life and probe what’s going on.\u003c/p>\n\u003cp>\u003cem>Dr. Frances Jensen on the teenage brain, in 2015\u003c/em>:\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"info": "What kind of no sabo word is Hyphenación? For us, it’s about living within a hyphenation. Like being a third-gen Mexican-American from the Texas border now living that Bay Area Chicano life. Like Xorje! Each week we bring together a couple of hyphenated Latinos to talk all about personal life choices: family, careers, relationships, belonging … everything is on the table. ",
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"info": "The Political Mind of Jerry Brown brings listeners the wisdom of the former Governor, Mayor, and presidential candidate. Scott Shafer interviewed Brown for more than 40 hours, covering the former governor's life and half-century in the political game – and Brown has some lessons he'd like to share. ",
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"marketplace": {
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"info": "Our flagship program, helmed by Kai Ryssdal, examines what the day in money delivered, through stories, conversations, newsworthy numbers and more. Updated Monday through Friday at about 3:30 p.m. PT.",
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"info": "The MindShift podcast explores the innovations in education that are shaping how kids learn. Hosts Ki Sung and Katrina Schwartz introduce listeners to educators, researchers, parents and students who are developing effective ways to improve how kids learn. We cover topics like how fed-up administrators are developing surprising tactics to deal with classroom disruptions; how listening to podcasts are helping kids develop reading skills; the consequences of overparenting; and why interdisciplinary learning can engage students on all ends of the traditional achievement spectrum. This podcast is part of the MindShift education site, a division of KQED News. KQED is an NPR/PBS member station based in San Francisco. You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>",
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"info": "For decades, the process for how police police themselves has been inconsistent – if not opaque. In some states, like California, these proceedings were completely hidden. After a new police transparency law unsealed scores of internal affairs files, our reporters set out to examine these cases and the shadow world of police discipline. On Our Watch brings listeners into the rooms where officers are questioned and witnesses are interrogated to find out who this system is really protecting. Is it the officers, or the public they've sworn to serve?",
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"info": "Our weekly podcast explores how the media 'sausage' is made, casts an incisive eye on fluctuations in the marketplace of ideas, and examines threats to the freedom of information and expression in America and abroad. For one hour a week, the show tries to lift the veil from the process of \"making media,\" especially news media, because it's through that lens that we see the world and the world sees us",
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"politicalbreakdown": {
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"title": "Political Breakdown",
"tagline": "Politics from a personal perspective",
"info": "Political Breakdown is a new series that explores the political intersection of California and the nation. Each week hosts Scott Shafer and Marisa Lagos are joined with a new special guest to unpack politics -- with personality — and offer an insider’s glimpse at how politics happens.",
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"possible": {
"id": "possible",
"title": "Possible",
"info": "Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? Each episode also includes a short fiction story generated by advanced AI GPT-4, serving as a thought-provoking springboard to speculate how humanity could leverage technology for good.",
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"pri-the-world": {
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"title": "PRI's The World: Latest Edition",
"info": "Each weekday, host Marco Werman and his team of producers bring you the world's most interesting stories in an hour of radio that reminds us just how small our planet really is.",
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"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/The-World-Podcast-Tile-360x360-1.jpg",
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"radiolab": {
"id": "radiolab",
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"info": "A two-time Peabody Award-winner, Radiolab is an investigation told through sounds and stories, and centered around one big idea. In the Radiolab world, information sounds like music and science and culture collide. Hosted by Jad Abumrad and Robert Krulwich, the show is designed for listeners who demand skepticism, but appreciate wonder. WNYC Studios is the producer of other leading podcasts including Freakonomics Radio, Death, Sex & Money, On the Media and many more.",
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"reveal": {
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"info": "Created by The Center for Investigative Reporting and PRX, Reveal is public radios first one-hour weekly radio show and podcast dedicated to investigative reporting. Credible, fact based and without a partisan agenda, Reveal combines the power and artistry of driveway moment storytelling with data-rich reporting on critically important issues. The result is stories that inform and inspire, arming our listeners with information to right injustices, hold the powerful accountable and improve lives.Reveal is hosted by Al Letson and showcases the award-winning work of CIR and newsrooms large and small across the nation. In a radio and podcast market crowded with choices, Reveal focuses on important and often surprising stories that illuminate the world for our listeners.",
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},
"rightnowish": {
"id": "rightnowish",
"title": "Rightnowish",
"tagline": "Art is where you find it",
"info": "Rightnowish digs into life in the Bay Area right now… ish. Journalist Pendarvis Harshaw takes us to galleries painted on the sides of liquor stores in West Oakland. We'll dance in warehouses in the Bayview, make smoothies with kids in South Berkeley, and listen to classical music in a 1984 Cutlass Supreme in Richmond. Every week, Pen talks to movers and shakers about how the Bay Area shapes what they create, and how they shape the place we call home.",
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"order": 16
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},
"science-friday": {
"id": "science-friday",
"title": "Science Friday",
"info": "Science Friday is a weekly science talk show, broadcast live over public radio stations nationwide. Each week, the show focuses on science topics that are in the news and tries to bring an educated, balanced discussion to bear on the scientific issues at hand. Panels of expert guests join host Ira Flatow, a veteran science journalist, to discuss science and to take questions from listeners during the call-in portion of the program.",
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"snap-judgment": {
"id": "snap-judgment",
"title": "Snap Judgment",
"tagline": "Real stories with killer beats",
"info": "The Snap Judgment radio show and podcast mixes real stories with killer beats to produce cinematic, dramatic radio. Snap's musical brand of storytelling dares listeners to see the world through the eyes of another. This is storytelling... with a BEAT!! Snap first aired on public radio stations nationwide in July 2010. Today, Snap Judgment airs on over 450 public radio stations and is brought to the airwaves by KQED & PRX.",
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