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"content": "\u003cp>\u003cem>Genetics researchers often discover certain snips and pieces of the human genome that are important for health and development such as the genetic mutations that cause cystic fibrosis or sickle cell anemia. And scientists noticed that genetic variants are more common in some races – which makes it seem like race is important in genetics research.\u003c/em>\u003c/p>\n\u003cp>\u003cem>But some researchers say that we've taken the concept too far. To find out what that means, we've talked to two of the authors of an \u003ca href=\"http://science.sciencemag.org/content/351/6273/564.full\">article\u003c/a> published Thursday in the journal \u003c/em>Science\u003cem>. Sarah Tishkoff is a human population geneticist and a professor at the University of Pennsylvania. Dorothy Roberts is a legal scholar, sociologist, and a professor at the University of Pennsylvania's Africana Studies department. \u003c/em>\u003cem>This interview has been edited for length and clarity. \u003c/em>\u003c/p>\n\u003cp>\u003cstrong>How do geneticists use race now, and how does that cause problems for science?\u003c/strong>\u003c/p>\n\u003cp>Sarah Tishkoff: We know people don't group according to so called races based purely on genetic data. Whenever the topic comes up, we have to address, how are we going to define race? I have never ever seen anybody come to a consensus at any of these human genetics meetings.\u003c/p>\n\u003caside class=\"pullquote alignright\">\"Whenever the topic comes up, we have to address, how are we going to define race? I have never ever seen anybody come to a consensus at any of these human genetics meetings.\"\u003c/aside>\n\u003cp>Dorothy Roberts: That's because race is based on cultural, legal, social and political determinations, and those groupings have changed over time. As a social scientist, looking at biologists treating these groupings as if they were determined by innate genetic distinctions, I'm dumbfounded. There's so much evidence that they're invented social categories. How you can say this is a biological race is just absurd. It's absurd. It violates the scientific evidence about human beings.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>ST: But I as a human geneticist wouldn't want to imply that there are no differences -- but among different ethnic groups, not racial classifications. For example, I'm Ashkenazi Jewish. I have a much higher risk of getting certain genetic diseases that are common in certain Ashkenazi Jewish populations. That was an important question when I was having children.\u003c/p>\n\u003cp>There was a drug, called BiDil, that somebody claimed is more effective with African Americans than other race – which was not true. But there are genes that play a role in drug metabolism. So if a doctor was prescribing drug treatment based on her identification of race she'd say, \"You should use drug A because that's better for people of European descent.\" But the patient might not carry the right gene. That might have negative consequences. That might be the wrong treatment for her.\u003c/p>\n\u003cp>DR: Race isn't a good category to use to understand those differences or the commonalities. It in many cases leads researchers down the wrong path and leads to harmful results for patients. For example black patients who have the symptoms of cystic fibrosis aren't diagnosed because doctors see it as a white disease.\u003c/p>\n\u003cp>\u003cstrong>So part of the problem is that when we see a high frequency of a medically relevant gene in one racial population, we start to assume that all members of that race have that gene?\u003c/strong>\u003c/p>\n\u003cp>ST: Yeah, I think that's right.\u003c/p>\n\u003cp>DR: People take what's a difference in [gene] frequency and turn it into a categorical difference that interprets it as if one race has one gene and another race doesn't have the gene. You can't reach the conclusion that because you know someone's race you know what their genes are. It's not the case that there are populations where 100 percent, everyone, has those genes \u003cem>and\u003c/em> nobody in other populations have those genes. It's a crude way and unhelpful way of figuring out what the disease risk is.\u003c/p>\n\u003cp>ST: That's not to say that genetic risk in disease isn't important. I do think geography is important, and I think that people historically during evolutionary history have adapted to different environments.\u003c/p>\n\u003cp>\u003cstrong>Is it that the science of genetics and the science of human populations are racist? Or is it that the numbers are there and, as a society, we're interpreting these things in a racist way?\u003c/strong>\u003c/p>\n\u003cp>DR: There is a long history of justifying the subordination of different groups and social groupings based on myths about their biologic or genetic predispositions. It's not only that there's scientific evidence that humans aren't divided into discrete biological categories we'd call races. But there's also evidence of the harm these biological meanings of race have caused for centuries. It's one of the reasons why it's difficult for human geneticists today to grapple with the meaning of race. You can't talk about race without also considering the history of racism.\u003c/p>\n\u003cp>ST: But modern human geneticists, we're not trying to say they have a racist agenda. It's a positive thing to try and increase studies of genetic diversity that may differ across different ethnicities or ancestries.\u003c/p>\n\u003cp>DR: Yes. I'm not trying to say anything about the motivations or what scientists are trying now to do. Our paper is a call for scientists to come up with better ways of understanding human genetic diversity without relying on this antiquated concept of race There is a failure of imagination for people to think, what is there something better that we can use? Let's develop that.\u003c/p>\n\u003cp>\u003cstrong>Is it that difficult, though? What are the things holding scientists back from developing something better?\u003c/strong>\u003c/p>\n\u003cp>ST: If I want a grant from the National Institutes of Health, I am required to check off the racial classification according to the U.S. government's census categories. I study very diverse people from all over Africa, but I believe the classification is African American or Black. I always feel awkward.\u003c/p>\n\u003cp>DR: The NIH guidelines require the use of race in recruiting research subjects. There's a history of advocating for that in order to increase the participation of minorities in clinical research. Then it gets confusing, because the researchers continue to use these categories in conducting the research. Scientists must conform their research to these admittedly social categories of race.\u003c/p>\n\u003cp>ST: One also has to take into account that you need a way to identify your study population. Ideally you want ethnically diverse populations, so obviously you have to have some way of identifying research subjects. And that's fine. But they don't need to say based on race. The language and terminology does matter.\u003c/p>\n\u003cp>DR: Except if the research question has to do with investigating the effects of racism – race as a social category that does affect people's lives and health and future because of the impact of social inequality. I often get the justification from doctors that 'I know it's crude but it's the best we have given the limited resources.'\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>ST: To some extent I think that's true. If a doctor doesn't have a readily available genetic test to look at ancestry or to look at individual genotypes of that person, race will be their best proxy. But the language matters. We need to move away from racial terminology, particularly in the field of medical genetics. That should just be eliminated. It reinforces the notion that there's a genetic basis to this classification system. We as scientists have to set an example.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Is+It+Time+To+Stop+Using+Race+In+Medical+Research%3F&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\" alt=\"\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cem>Genetics researchers often discover certain snips and pieces of the human genome that are important for health and development such as the genetic mutations that cause cystic fibrosis or sickle cell anemia. And scientists noticed that genetic variants are more common in some races – which makes it seem like race is important in genetics research.\u003c/em>\u003c/p>\n\u003cp>\u003cem>But some researchers say that we've taken the concept too far. To find out what that means, we've talked to two of the authors of an \u003ca href=\"http://science.sciencemag.org/content/351/6273/564.full\">article\u003c/a> published Thursday in the journal \u003c/em>Science\u003cem>. Sarah Tishkoff is a human population geneticist and a professor at the University of Pennsylvania. Dorothy Roberts is a legal scholar, sociologist, and a professor at the University of Pennsylvania's Africana Studies department. \u003c/em>\u003cem>This interview has been edited for length and clarity. \u003c/em>\u003c/p>\n\u003cp>\u003cstrong>How do geneticists use race now, and how does that cause problems for science?\u003c/strong>\u003c/p>\n\u003cp>Sarah Tishkoff: We know people don't group according to so called races based purely on genetic data. Whenever the topic comes up, we have to address, how are we going to define race? I have never ever seen anybody come to a consensus at any of these human genetics meetings.\u003c/p>\n\u003caside class=\"pullquote alignright\">\"Whenever the topic comes up, we have to address, how are we going to define race? I have never ever seen anybody come to a consensus at any of these human genetics meetings.\"\u003c/aside>\n\u003cp>Dorothy Roberts: That's because race is based on cultural, legal, social and political determinations, and those groupings have changed over time. As a social scientist, looking at biologists treating these groupings as if they were determined by innate genetic distinctions, I'm dumbfounded. There's so much evidence that they're invented social categories. How you can say this is a biological race is just absurd. It's absurd. It violates the scientific evidence about human beings.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>ST: But I as a human geneticist wouldn't want to imply that there are no differences -- but among different ethnic groups, not racial classifications. For example, I'm Ashkenazi Jewish. I have a much higher risk of getting certain genetic diseases that are common in certain Ashkenazi Jewish populations. That was an important question when I was having children.\u003c/p>\n\u003cp>There was a drug, called BiDil, that somebody claimed is more effective with African Americans than other race – which was not true. But there are genes that play a role in drug metabolism. So if a doctor was prescribing drug treatment based on her identification of race she'd say, \"You should use drug A because that's better for people of European descent.\" But the patient might not carry the right gene. That might have negative consequences. That might be the wrong treatment for her.\u003c/p>\n\u003cp>DR: Race isn't a good category to use to understand those differences or the commonalities. It in many cases leads researchers down the wrong path and leads to harmful results for patients. For example black patients who have the symptoms of cystic fibrosis aren't diagnosed because doctors see it as a white disease.\u003c/p>\n\u003cp>\u003cstrong>So part of the problem is that when we see a high frequency of a medically relevant gene in one racial population, we start to assume that all members of that race have that gene?\u003c/strong>\u003c/p>\n\u003cp>ST: Yeah, I think that's right.\u003c/p>\n\u003cp>DR: People take what's a difference in [gene] frequency and turn it into a categorical difference that interprets it as if one race has one gene and another race doesn't have the gene. You can't reach the conclusion that because you know someone's race you know what their genes are. 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It's not only that there's scientific evidence that humans aren't divided into discrete biological categories we'd call races. But there's also evidence of the harm these biological meanings of race have caused for centuries. It's one of the reasons why it's difficult for human geneticists today to grapple with the meaning of race. You can't talk about race without also considering the history of racism.\u003c/p>\n\u003cp>ST: But modern human geneticists, we're not trying to say they have a racist agenda. It's a positive thing to try and increase studies of genetic diversity that may differ across different ethnicities or ancestries.\u003c/p>\n\u003cp>DR: Yes. I'm not trying to say anything about the motivations or what scientists are trying now to do. Our paper is a call for scientists to come up with better ways of understanding human genetic diversity without relying on this antiquated concept of race There is a failure of imagination for people to think, what is there something better that we can use? Let's develop that.\u003c/p>\n\u003cp>\u003cstrong>Is it that difficult, though? What are the things holding scientists back from developing something better?\u003c/strong>\u003c/p>\n\u003cp>ST: If I want a grant from the National Institutes of Health, I am required to check off the racial classification according to the U.S. government's census categories. I study very diverse people from all over Africa, but I believe the classification is African American or Black. I always feel awkward.\u003c/p>\n\u003cp>DR: The NIH guidelines require the use of race in recruiting research subjects. There's a history of advocating for that in order to increase the participation of minorities in clinical research. 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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>ST: To some extent I think that's true. If a doctor doesn't have a readily available genetic test to look at ancestry or to look at individual genotypes of that person, race will be their best proxy. But the language matters. We need to move away from racial terminology, particularly in the field of medical genetics. That should just be eliminated. It reinforces the notion that there's a genetic basis to this classification system. We as scientists have to set an example.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Is+It+Time+To+Stop+Using+Race+In+Medical+Research%3F&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\" alt=\"\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Mice were much healthier and lived about 25 percent longer when scientists killed off a certain kind of cell that accumulates in the body with age.\u003c/p>\n\u003cp>What's more, the mice didn't seem to suffer any ill effects from losing their so-called senescent cells.\u003c/p>\n\u003caside class=\"pullquote alignright\">Not only did the mice live 25 percent longer, but they had fewer cataracts, hearts with better stress tolerance and improved kidney function.\u003c/aside>\n\u003cp>These are cells that have stopped dividing, though not necessarily because the cells themselves are old. \"It's a normal cell that experienced an unusual amount of stress, and it decided to stop dividing,\" says \u003ca href=\"http://www.mayo.edu/research/faculty/van-deursen-jan-ph-d/bio-00027650\">Jan van Deursen\u003c/a>, who studies senescent cells at the Mayo Clinic College of Medicine in Rochester, Minnesota.\u003c/p>\n\u003cp>Older creatures have a lot more of these cells than young 'uns. And even though the cells aren't dividing, they do keep busy — they secrete a mixture of chemicals that can trigger inflammation, which seems to be involved in just about every major age-related disease.\u003c/p>\n\u003cp>So van Deursen and his colleagues wanted to know: What would happen if you simply got rid of senescent cells? That's tough to do in humans, but possible in mice.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The researchers created mice that were genetically altered so that giving them a drug would trigger senescent cells to kill themselves. Then they waited until the mice reached middle age, and gave some of them the drug.\u003c/p>\n\u003cp>At first, wiping out the senescent cells didn't seem to make much difference. But as the mice got older, the research team could see that the treated mice looked healthier.\u003c/p>\n\u003cp>\"And then when we started to record the life span of the animals, we saw that there was about a 25 percent extension in life span of animals that had their senescent cells removed from 1 year of age on,\" says van Deursen.\u003c/p>\n\u003cp>What's more, the treated mice had fewer cataracts, hearts with better stress tolerance, and improved kidney function. And losing the cells didn't seem to cause them any problems, the researchers \u003ca href=\"http://www.nature.com/nature/journal/vaop/ncurrent/full/nature16932.html\">report\u003c/a> Wednesday in the journal \u003cem>Nature.\u003c/em>\u003c/p>\n\u003cp>The bottom line, says van Deursen, is that \"it seems like we're accumulating a cell type that we really don't need for anything and that makes us more unhealthy and reduces the length of our healthy lives.\"\u003c/p>\n\u003cp>Needless to say, the hunt is already on for drugs that could eliminate these cells in people. That's not going to happen tomorrow, of course, and useful drugs might never materialize. But the findings in mice provide researchers with a new place to look.\u003c/p>\n\u003cp>Van Deursen himself is working with a new company, \u003ca href=\"http://unitybiotechnology.com/\">Unity Biotechnology\u003c/a> in San Francisco, that has some promising candidates.\u003c/p>\n\u003cp>A scientist named \u003ca href=\"http://www.buckinstitute.org/campisiLab\">Judith Campisi\u003c/a>, who studies senescent cells at the independent Buck Institute for Research on Aging, also works with Unity. She thinks the findings of the latest study are significant. \"The impressive thing is those mice not only lived longer but they lived healthier,\" says Campisi.\u003c/p>\n\u003cp>But she cautions that removing these cells isn't going to be a magic bullet against aging.\u003c/p>\n\u003cp>\"Obviously, even in the \u003cem>Nature\u003c/em> paper, those mice got old and died,\" she points out.\u003c/p>\n\u003cp>And some research shows that these cells may have a useful role to play in our bodies. For example, there's evidence that senescent cells aid wound healing and that cellular senescence helps protect against cancer.\u003c/p>\n\u003cp>\"One needs to move forward with care about trying to just kill off senescent cells with the anticipation that things will be wholly beneficial,\" says \u003ca href=\"http://www.imperial.ac.uk/people/d.withers\">Dominic Withers\u003c/a>, a researcher at the MRC Clinical Sciences Centre, Imperial College London.\u003c/p>\n\u003cp>He says it looks like these cells do contribute to aging, but it's too soon to say what to do with them.\u003c/p>\n\u003cp>\"I think it's early days at the moment,\" Withers says. \"There's still quite a lot to learn about whether you would want to try and kill senescent cells or do something to the senescent cells that exist, such as stop them secreting this cocktail of potentially bad molecules.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Boosting+Life+Span+By+Clearing+Out+Cellular+Clutter&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\" alt=\"\">\u003c/div>\n\u003cp>\u003c/p>\n\u003cp> \u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Mice were much healthier and lived about 25 percent longer when scientists killed off a certain kind of cell that accumulates in the body with age.\u003c/p>\n\u003cp>What's more, the mice didn't seem to suffer any ill effects from losing their so-called senescent cells.\u003c/p>\n\u003caside class=\"pullquote alignright\">Not only did the mice live 25 percent longer, but they had fewer cataracts, hearts with better stress tolerance and improved kidney function.\u003c/aside>\n\u003cp>These are cells that have stopped dividing, though not necessarily because the cells themselves are old. \"It's a normal cell that experienced an unusual amount of stress, and it decided to stop dividing,\" says \u003ca href=\"http://www.mayo.edu/research/faculty/van-deursen-jan-ph-d/bio-00027650\">Jan van Deursen\u003c/a>, who studies senescent cells at the Mayo Clinic College of Medicine in Rochester, Minnesota.\u003c/p>\n\u003cp>Older creatures have a lot more of these cells than young 'uns. And even though the cells aren't dividing, they do keep busy — they secrete a mixture of chemicals that can trigger inflammation, which seems to be involved in just about every major age-related disease.\u003c/p>\n\u003cp>So van Deursen and his colleagues wanted to know: What would happen if you simply got rid of senescent cells? That's tough to do in humans, but possible in mice.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The researchers created mice that were genetically altered so that giving them a drug would trigger senescent cells to kill themselves. Then they waited until the mice reached middle age, and gave some of them the drug.\u003c/p>\n\u003cp>At first, wiping out the senescent cells didn't seem to make much difference. But as the mice got older, the research team could see that the treated mice looked healthier.\u003c/p>\n\u003cp>\"And then when we started to record the life span of the animals, we saw that there was about a 25 percent extension in life span of animals that had their senescent cells removed from 1 year of age on,\" says van Deursen.\u003c/p>\n\u003cp>What's more, the treated mice had fewer cataracts, hearts with better stress tolerance, and improved kidney function. And losing the cells didn't seem to cause them any problems, the researchers \u003ca href=\"http://www.nature.com/nature/journal/vaop/ncurrent/full/nature16932.html\">report\u003c/a> Wednesday in the journal \u003cem>Nature.\u003c/em>\u003c/p>\n\u003cp>The bottom line, says van Deursen, is that \"it seems like we're accumulating a cell type that we really don't need for anything and that makes us more unhealthy and reduces the length of our healthy lives.\"\u003c/p>\n\u003cp>Needless to say, the hunt is already on for drugs that could eliminate these cells in people. That's not going to happen tomorrow, of course, and useful drugs might never materialize. But the findings in mice provide researchers with a new place to look.\u003c/p>\n\u003cp>Van Deursen himself is working with a new company, \u003ca href=\"http://unitybiotechnology.com/\">Unity Biotechnology\u003c/a> in San Francisco, that has some promising candidates.\u003c/p>\n\u003cp>A scientist named \u003ca href=\"http://www.buckinstitute.org/campisiLab\">Judith Campisi\u003c/a>, who studies senescent cells at the independent Buck Institute for Research on Aging, also works with Unity. She thinks the findings of the latest study are significant. \"The impressive thing is those mice not only lived longer but they lived healthier,\" says Campisi.\u003c/p>\n\u003cp>But she cautions that removing these cells isn't going to be a magic bullet against aging.\u003c/p>\n\u003cp>\"Obviously, even in the \u003cem>Nature\u003c/em> paper, those mice got old and died,\" she points out.\u003c/p>\n\u003cp>And some research shows that these cells may have a useful role to play in our bodies. For example, there's evidence that senescent cells aid wound healing and that cellular senescence helps protect against cancer.\u003c/p>\n\u003cp>\"One needs to move forward with care about trying to just kill off senescent cells with the anticipation that things will be wholly beneficial,\" says \u003ca href=\"http://www.imperial.ac.uk/people/d.withers\">Dominic Withers\u003c/a>, a researcher at the MRC Clinical Sciences Centre, Imperial College London.\u003c/p>\n\u003cp>He says it looks like these cells do contribute to aging, but it's too soon to say what to do with them.\u003c/p>\n\u003cp>\"I think it's early days at the moment,\" Withers says. \"There's still quite a lot to learn about whether you would want to try and kill senescent cells or do something to the senescent cells that exist, such as stop them secreting this cocktail of potentially bad molecules.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Boosting+Life+Span+By+Clearing+Out+Cellular+Clutter&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\" alt=\"\">\u003c/div>\n\u003cp>\u003c/p>\n\u003cp> \u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Martin Shkreli Refuses to Testify Before Congress, Then Calls Members 'Imbeciles'",
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"content": "\u003cp>Infuriating members of Congress, a smirking Martin Shkreli took the Fifth at a Capitol Hill hearing Thursday when asked about his jacking up of drug prices, then promptly went on Twitter and insulted his questioners as \"imbeciles.\"\u003c/p>\n\u003cp>The brash, 32-year-old entrepreneur who has been vilified as the new face of pharmaceutical-industry greed was summoned by the House Oversight and Government Reform Committee, which is investigating soaring prices for critical medicines.\u003c/p>\n\u003cp>Four times, he intoned: \"On the advice of counsel, I invoke my Fifth Amendment privilege against self-incrimination and respectfully decline to answer your question.\"\u003c/p>\n\u003cp>Lawmakers erupted. Rep. Elijah Cummings of Maryland, the top Democrat on the committee, told Shkreli to wipe the smirk off his face.\u003c/p>\n\u003cp>\"I call this money blood money ... coming out of the pockets of hardworking Americans,\" he said, as Shkreli sat through the lecture.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"I know you are smiling, but I am very serious, sir,\" Cummings said. \"I truly believe you can become a force of tremendous good. All I ask is that you reflect on it. No, I don't ask, I beg that you reflect on it. \"\u003c/p>\n\u003cblockquote class=\"twitter-tweet\">\n\u003cp dir=\"ltr\" lang=\"en\">Hard to accept that these imbeciles represent the people in our government.\u003c/p>\n\u003cp>— Martin Shkreli (@MartinShkreli) \u003ca href=\"https://twitter.com/MartinShkreli/status/695264859907317761\">February 4, 2016\u003c/a>\u003c/p>\u003c/blockquote>\n\u003cblockquote class=\"twitter-tweet\">\n\u003cp lang=\"en\" dir=\"ltr\">You know what's sort of cool \u003ca href=\"https://twitter.com/MartinShkreli\">@MartinShkreli\u003c/a>? That I represent the people and you are under federal indictment. \u003ca href=\"https://t.co/acQvPEuPrT\">https://t.co/acQvPEuPrT\u003c/a>\u003c/p>\n\u003cp>— Ted Lieu (@tedlieu) \u003ca href=\"https://twitter.com/tedlieu/status/695273475229949952\">February 4, 2016\u003c/a>\u003c/p>\u003c/blockquote>\n\u003cp>The former hedge fund manager with a frat-boy swagger has been reviled in recent months for buying Daraprim, the only approved drug for a rare and sometimes deadly parasitic infection, and unapologetically raising its price more than fiftyfold.\u003c/p>\n\u003cp>Shkreli is out on $5 million bail after being arrested in New York in December on securities-fraud charges unrelated to the price increase.\u003c/p>\n\u003cp>Shkreli, wearing a sport jacket and open-collar shirt, was dismissed less than an hour into the hearing, but not before Chairman Rep. Jason Chaffetz, R-Utah, shouted down a request by Shkreli's attorney to speak. Lawmakers instead took turns denouncing his conduct and attitude.\u003c/p>\n\u003cp>Minutes after he left — and even before the hearing had ended — Shkreli thumbed his nose at the committee.\u003c/p>\n\u003cp>\"Hard to accept that these imbeciles represent the people in our government,\" the former CEO of Turing Pharmaceuticals tweeted.\u003c/p>\n\u003cp>Shkreli's attorney Benjamin Brafman later said in his defense: \"He meant no disrespect, but in truth, statements made by some of the members of the committee were wrong, unfair and difficult to listen to without responding.\"\u003c/p>\n\u003cp>Shkreli calls himself \"the world's most eligible bachelor\" and \"the most successful Albanian to ever walk the face of this Earth.\" He strums his guitar on YouTube and paid a reported $2 million for the only known copy of an album by the Wu-Tang Clan.\u003c/p>\n\u003cp>After Shkreli's departure, Turing's chief commercial officer and the interim CEO of Canada's largest drugmaker, Valeant Pharmaceuticals, received a bipartisan lashing from the lawmakers.\u003c/p>\n\u003cp>Chaffetz, an admitted \"conservative guy\" who accepts that companies need to make profits, said he was disgusted. And Rep. Carolyn Maloney, D-N.Y., told them: \"This is a scandal, an absolute abuse of power, an abuse of the pharmaceutical industry.\"\u003c/p>\n\u003cp>Internal documents released by the committee show that Valeant and Turing have made a practice of buying and then dramatically raising prices for low-cost drugs given to patients with life-threatening conditions such as heart disease, AIDS and cancer.\u003c/p>\n\u003cp>The two companies' executives insisted they are committed to ensuring that cost isn't a deterrent for patients who need the drugs.\u003c/p>\n\u003cp>With Shkreli mum, it was up to Turing's Nancy Retzlaff to defend the Daraprim price rise. She said about 3,000 people are treated with Daraprim, and only 25 percent are covered by commercial insurance. She added that the overall impact of the drug on the budget of commercial health plans \"is very, very small.\"\u003c/p>\n\u003cp>The documents show how executives at both companies planned to maximize profits while fending off negative publicity.\u003c/p>\n\u003cp>As early as last May, Turing planned to turn Daraprim into a $200-million-a-year drug by dramatically increasing its price, according to documents obtained by the committee. Turing bought the 60-year-old drug in August for $55 million.\u003c/p>\n\u003cp>Shkreli said in an email to one contact: \"We raised the price from $1,700 per bottle to $75,000. Should be a very handsome investment for all of us.\"\u003c/p>\n\u003cp>But the company also warned in an internal memo of a possible backlash from advocates for HIV patients.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>As for Valeant, documents indicate the company believed it could repeatedly raise the prices of Nitropress and Isuprel without repercussions because the drugs are administered by hospitals, which are less price-sensitive than consumers.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Infuriating members of Congress, a smirking Martin Shkreli took the Fifth at a Capitol Hill hearing Thursday when asked about his jacking up of drug prices, then promptly went on Twitter and insulted his questioners as \"imbeciles.\"\u003c/p>\n\u003cp>The brash, 32-year-old entrepreneur who has been vilified as the new face of pharmaceutical-industry greed was summoned by the House Oversight and Government Reform Committee, which is investigating soaring prices for critical medicines.\u003c/p>\n\u003cp>Four times, he intoned: \"On the advice of counsel, I invoke my Fifth Amendment privilege against self-incrimination and respectfully decline to answer your question.\"\u003c/p>\n\u003cp>Lawmakers erupted. Rep. Elijah Cummings of Maryland, the top Democrat on the committee, told Shkreli to wipe the smirk off his face.\u003c/p>\n\u003cp>\"I call this money blood money ... coming out of the pockets of hardworking Americans,\" he said, as Shkreli sat through the lecture.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"I know you are smiling, but I am very serious, sir,\" Cummings said. \"I truly believe you can become a force of tremendous good. All I ask is that you reflect on it. No, I don't ask, I beg that you reflect on it. \"\u003c/p>\n\u003cblockquote class=\"twitter-tweet\">\n\u003cp dir=\"ltr\" lang=\"en\">Hard to accept that these imbeciles represent the people in our government.\u003c/p>\n\u003cp>— Martin Shkreli (@MartinShkreli) \u003ca href=\"https://twitter.com/MartinShkreli/status/695264859907317761\">February 4, 2016\u003c/a>\u003c/p>\u003c/blockquote>\n\u003cblockquote class=\"twitter-tweet\">\n\u003cp lang=\"en\" dir=\"ltr\">You know what's sort of cool \u003ca href=\"https://twitter.com/MartinShkreli\">@MartinShkreli\u003c/a>? That I represent the people and you are under federal indictment. \u003ca href=\"https://t.co/acQvPEuPrT\">https://t.co/acQvPEuPrT\u003c/a>\u003c/p>\n\u003cp>— Ted Lieu (@tedlieu) \u003ca href=\"https://twitter.com/tedlieu/status/695273475229949952\">February 4, 2016\u003c/a>\u003c/p>\u003c/blockquote>\n\u003cp>The former hedge fund manager with a frat-boy swagger has been reviled in recent months for buying Daraprim, the only approved drug for a rare and sometimes deadly parasitic infection, and unapologetically raising its price more than fiftyfold.\u003c/p>\n\u003cp>Shkreli is out on $5 million bail after being arrested in New York in December on securities-fraud charges unrelated to the price increase.\u003c/p>\n\u003cp>Shkreli, wearing a sport jacket and open-collar shirt, was dismissed less than an hour into the hearing, but not before Chairman Rep. Jason Chaffetz, R-Utah, shouted down a request by Shkreli's attorney to speak. Lawmakers instead took turns denouncing his conduct and attitude.\u003c/p>\n\u003cp>Minutes after he left — and even before the hearing had ended — Shkreli thumbed his nose at the committee.\u003c/p>\n\u003cp>\"Hard to accept that these imbeciles represent the people in our government,\" the former CEO of Turing Pharmaceuticals tweeted.\u003c/p>\n\u003cp>Shkreli's attorney Benjamin Brafman later said in his defense: \"He meant no disrespect, but in truth, statements made by some of the members of the committee were wrong, unfair and difficult to listen to without responding.\"\u003c/p>\n\u003cp>Shkreli calls himself \"the world's most eligible bachelor\" and \"the most successful Albanian to ever walk the face of this Earth.\" He strums his guitar on YouTube and paid a reported $2 million for the only known copy of an album by the Wu-Tang Clan.\u003c/p>\n\u003cp>After Shkreli's departure, Turing's chief commercial officer and the interim CEO of Canada's largest drugmaker, Valeant Pharmaceuticals, received a bipartisan lashing from the lawmakers.\u003c/p>\n\u003cp>Chaffetz, an admitted \"conservative guy\" who accepts that companies need to make profits, said he was disgusted. And Rep. Carolyn Maloney, D-N.Y., told them: \"This is a scandal, an absolute abuse of power, an abuse of the pharmaceutical industry.\"\u003c/p>\n\u003cp>Internal documents released by the committee show that Valeant and Turing have made a practice of buying and then dramatically raising prices for low-cost drugs given to patients with life-threatening conditions such as heart disease, AIDS and cancer.\u003c/p>\n\u003cp>The two companies' executives insisted they are committed to ensuring that cost isn't a deterrent for patients who need the drugs.\u003c/p>\n\u003cp>With Shkreli mum, it was up to Turing's Nancy Retzlaff to defend the Daraprim price rise. She said about 3,000 people are treated with Daraprim, and only 25 percent are covered by commercial insurance. She added that the overall impact of the drug on the budget of commercial health plans \"is very, very small.\"\u003c/p>\n\u003cp>The documents show how executives at both companies planned to maximize profits while fending off negative publicity.\u003c/p>\n\u003cp>As early as last May, Turing planned to turn Daraprim into a $200-million-a-year drug by dramatically increasing its price, according to documents obtained by the committee. Turing bought the 60-year-old drug in August for $55 million.\u003c/p>\n\u003cp>Shkreli said in an email to one contact: \"We raised the price from $1,700 per bottle to $75,000. Should be a very handsome investment for all of us.\"\u003c/p>\n\u003cp>But the company also warned in an internal memo of a possible backlash from advocates for HIV patients.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>As for Valeant, documents indicate the company believed it could repeatedly raise the prices of Nitropress and Isuprel without repercussions because the drugs are administered by hospitals, which are less price-sensitive than consumers.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Is it Ethical to Create Babies With Genes From Three People? Panel Says Yes",
"title": "Is it Ethical to Create Babies With Genes From Three People? Panel Says Yes",
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"content": "\u003cp>Would it be ethical for scientists to try to create babies that have genetic material from three different people? An influential panel of experts has concluded the answer could be yes.\u003c/p>\n\u003cp>The 12-member panel, assembled by the National Academies of Sciences, Engineering and Medicine, released a 164-page \u003ca href=\"http://www.nap.edu/catalog/21871/mitochondrial-replacement-techniques-ethical-social-and-policy-considerations\">report\u003c/a> Wednesday outlining a plan for how scientists could ethically pursue the controversial research.\u003c/p>\n\u003cp>\"The committee concludes that it is ethically permissible\" to conduct such experiments, the report says, but then goes on to detail a long list of conditions that would have to be met first.\u003c/p>\n\u003cp>For example, scientists would have to perform extensive preliminary research in the laboratory and with animals to try to make sure it is safe. And then researchers should initially try to make only male babies, because they would be incapable of passing their unusual amalgamation of DNA on to future generations.\u003c/p>\n\u003cp>\"Minimizing risk to future children should be of highest priority,\" the committee writes.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The report was \u003ca href=\"http://www.npr.org/sections/health-shots/2013/10/09/229167219/proposed-treatment-to-fix-genetic-diseases-raising-ethics-issues\">requested \u003c/a>by the Food and Drug Administration in response to applications by two groups of scientists in New York and Oregon to conduct the experiments. Their goal is to help women have healthy babies even though they come from families plagued by genetic disorders.\u003c/p>\n\u003cp>A statement issued by the FDA immediately after the report's release raised questions about whether the FDA would permit the research to move forward.\u003c/p>\n\u003cp>The FDA email praised the \"thoughtful work\" of the panel and said the agency would be \"reviewing\" the recommendations. But it noted that the latest federal budget \"prevents the FDA from using funds to review applications in which a human embryo is intentionally created or modified to include\" changes that could be passed down to future generations. As a result, the email says, any such research \"cannot be performed in the United States\" at this time.\u003c/p>\n\u003cp>The researchers pursuing these experiments welcomed the panel's conclusions.\u003c/p>\n\u003cp>\"I think it's a great step in the right direction,\" \u003ca href=\"http://www.columbiaobgyn.org/doctor/mark-v-sauer#.VrFk2bIrLIU\">Mark Sauer\u003c/a>, a professor of obstetrics and gynecology at Columbia University who is a member of one of the teams, said of the National Academies report in an interview before the FDA issued its statement\u003cem>.\u003c/em>\u003c/p>\n\u003cp>Sauer called the report more of a \"yellow light\" than a \"green light,\" because of the long list of caveats and cautions. But that is \"better than a red light,\" he says.\u003c/p>\n\u003cp>\"Most importantly to us is that it allows the work to continue to hopefully produce children without these disorders,\" Sauer says.\u003c/p>\n\u003cp>But Sauer said he was disappointed when he learned of the FDA's response.\u003c/p>\n\u003cp>\"Politics as usual often gets in way of progress,\" Sauer said in a subsequent email. While the FDA statement would cause \"undue delays\" in his research, he added that he hoped it wouldn't permanently \"necessarily halt the efforts.\"\u003c/p>\n\u003cp>Critics of the research, meanwhile, say the number of women who could benefit from the experiments is so small that it's not worth crossing a line that's long been considered off-limits — making genetic changes that could be passed down for generations.\u003c/p>\n\u003cp>\"The possibility of what you could call 'mission creep' is very real,\" says \u003ca href=\"http://www.geneticsandsociety.org/article.php?id=2081\">Marcy Darnovsky\u003c/a>, executive director of the Center for Genetics and Society, a watchdog group based in Berkeley, Calif. \"People are talking about going forward not just with this but with the kind of genetic engineering that will produce outright genetically modified human beings.\"\u003c/p>\n\u003cp>Once that happens, Darnovsky says, \"I think you get into a situation of where some people are genetically enhanced and other people are the regular old variety of human being. And I don't think that's a world we want to live in.\"\u003c/p>\n\u003cp>The goal of the research is to help women carrying diseases known as \u003ca href=\"http://mitochondrialdiseases.org/mitochondrial-disease/\">mitochondrial disorders\u003c/a>, which are only passed down by women through defects in the genetic material in their eggs.\u003c/p>\n\u003cp>Specifically, the defects are in a type of genetic material known as \u003ca href=\"http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934627\">mitochondrial DNA\u003c/a>.\u003c/p>\n\u003cp>Unlike the DNA that most people are familiar with — the 23 pairs of human chromosomes that program most of our body processes and traits — mitochondrial DNA consists of just 37 genes inside mitochondria, which are structures inside cells that provide their energy.\u003c/p>\n\u003cp>Mitochondrial disorders range from mild to severe. In many cases there is no treatment, and the affected child dies early in life after suffering progressive, debilitating symptoms.\u003c/p>\n\u003cp>Scientists want to create eggs free of mitochondrial defects by removing the defective mitochondrial DNA. It would be replaced with healthy mitochondrial DNA from eggs donated by other women.\u003c/p>\n\u003cp>The British government recently \u003ca href=\"http://www.npr.org/2015/02/03/383578221/u-k-lawmakers-allow-scientists-to-attempt-dna-transplants\">approved\u003c/a> such experiments in that country.\u003c/p>\n\u003cp>But this remains \u003ca href=\"http://www.npr.org/sections/health-shots/2014/11/10/360342623/combining-the-dna-of-three-people-raises-ethical-questions\">controversial\u003c/a>, not only due to the fact that the resulting children would have DNA from three people. Because the transplanted DNA could be passed down for generations, critics fear it could accidentally introduce errors into the human gene pool that could create new diseases.\u003c/p>\n\u003cp>They also worry it would set a precedent that could open the door to creating designer babies, in which parents can pick and chose the traits of their children.\u003c/p>\n\u003cp>Because of such concerns, making any change in DNA that could be passed down for generations has long been considered off-limits.\u003c/p>\n\u003cp>The committee report acknowledged that making babies with DNA from three different people could have \"psychological and social effects\" on the offspring, including issues about their \"conception of identity.\"\u003c/p>\n\u003cp>In addition, the committee acknowledged the possibility that it could lead to attempts at genetic \"enhancements.\"\u003c/p>\n\u003cp>Such work would raise thorny regulatory issues, the committee noted. For example, the federal government is prohibited from funding research that involves destroying human embryos. As a result, \"even an agency request\" for data from such research in support of FDA approval \"could well be controversial,\" the report says.\u003c/p>\n\u003cp>Nevertheless, the committee says the potential benefits make the work worth pursuing with careful oversight.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>Moreover, the FDA could at some point even consider letting experiments proceed to try to create female babies if certain criteria are met, the report said, including the production of \"clear evidence of safety and efficacy from male\" experiments and signs that it would be publicly acceptable.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. 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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Would it be ethical for scientists to try to create babies that have genetic material from three different people? An influential panel of experts has concluded the answer could be yes.\u003c/p>\n\u003cp>The 12-member panel, assembled by the National Academies of Sciences, Engineering and Medicine, released a 164-page \u003ca href=\"http://www.nap.edu/catalog/21871/mitochondrial-replacement-techniques-ethical-social-and-policy-considerations\">report\u003c/a> Wednesday outlining a plan for how scientists could ethically pursue the controversial research.\u003c/p>\n\u003cp>\"The committee concludes that it is ethically permissible\" to conduct such experiments, the report says, but then goes on to detail a long list of conditions that would have to be met first.\u003c/p>\n\u003cp>For example, scientists would have to perform extensive preliminary research in the laboratory and with animals to try to make sure it is safe. And then researchers should initially try to make only male babies, because they would be incapable of passing their unusual amalgamation of DNA on to future generations.\u003c/p>\n\u003cp>\"Minimizing risk to future children should be of highest priority,\" the committee writes.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The report was \u003ca href=\"http://www.npr.org/sections/health-shots/2013/10/09/229167219/proposed-treatment-to-fix-genetic-diseases-raising-ethics-issues\">requested \u003c/a>by the Food and Drug Administration in response to applications by two groups of scientists in New York and Oregon to conduct the experiments. Their goal is to help women have healthy babies even though they come from families plagued by genetic disorders.\u003c/p>\n\u003cp>A statement issued by the FDA immediately after the report's release raised questions about whether the FDA would permit the research to move forward.\u003c/p>\n\u003cp>The FDA email praised the \"thoughtful work\" of the panel and said the agency would be \"reviewing\" the recommendations. But it noted that the latest federal budget \"prevents the FDA from using funds to review applications in which a human embryo is intentionally created or modified to include\" changes that could be passed down to future generations. As a result, the email says, any such research \"cannot be performed in the United States\" at this time.\u003c/p>\n\u003cp>The researchers pursuing these experiments welcomed the panel's conclusions.\u003c/p>\n\u003cp>\"I think it's a great step in the right direction,\" \u003ca href=\"http://www.columbiaobgyn.org/doctor/mark-v-sauer#.VrFk2bIrLIU\">Mark Sauer\u003c/a>, a professor of obstetrics and gynecology at Columbia University who is a member of one of the teams, said of the National Academies report in an interview before the FDA issued its statement\u003cem>.\u003c/em>\u003c/p>\n\u003cp>Sauer called the report more of a \"yellow light\" than a \"green light,\" because of the long list of caveats and cautions. But that is \"better than a red light,\" he says.\u003c/p>\n\u003cp>\"Most importantly to us is that it allows the work to continue to hopefully produce children without these disorders,\" Sauer says.\u003c/p>\n\u003cp>But Sauer said he was disappointed when he learned of the FDA's response.\u003c/p>\n\u003cp>\"Politics as usual often gets in way of progress,\" Sauer said in a subsequent email. While the FDA statement would cause \"undue delays\" in his research, he added that he hoped it wouldn't permanently \"necessarily halt the efforts.\"\u003c/p>\n\u003cp>Critics of the research, meanwhile, say the number of women who could benefit from the experiments is so small that it's not worth crossing a line that's long been considered off-limits — making genetic changes that could be passed down for generations.\u003c/p>\n\u003cp>\"The possibility of what you could call 'mission creep' is very real,\" says \u003ca href=\"http://www.geneticsandsociety.org/article.php?id=2081\">Marcy Darnovsky\u003c/a>, executive director of the Center for Genetics and Society, a watchdog group based in Berkeley, Calif. \"People are talking about going forward not just with this but with the kind of genetic engineering that will produce outright genetically modified human beings.\"\u003c/p>\n\u003cp>Once that happens, Darnovsky says, \"I think you get into a situation of where some people are genetically enhanced and other people are the regular old variety of human being. And I don't think that's a world we want to live in.\"\u003c/p>\n\u003cp>The goal of the research is to help women carrying diseases known as \u003ca href=\"http://mitochondrialdiseases.org/mitochondrial-disease/\">mitochondrial disorders\u003c/a>, which are only passed down by women through defects in the genetic material in their eggs.\u003c/p>\n\u003cp>Specifically, the defects are in a type of genetic material known as \u003ca href=\"http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934627\">mitochondrial DNA\u003c/a>.\u003c/p>\n\u003cp>Unlike the DNA that most people are familiar with — the 23 pairs of human chromosomes that program most of our body processes and traits — mitochondrial DNA consists of just 37 genes inside mitochondria, which are structures inside cells that provide their energy.\u003c/p>\n\u003cp>Mitochondrial disorders range from mild to severe. In many cases there is no treatment, and the affected child dies early in life after suffering progressive, debilitating symptoms.\u003c/p>\n\u003cp>Scientists want to create eggs free of mitochondrial defects by removing the defective mitochondrial DNA. It would be replaced with healthy mitochondrial DNA from eggs donated by other women.\u003c/p>\n\u003cp>The British government recently \u003ca href=\"http://www.npr.org/2015/02/03/383578221/u-k-lawmakers-allow-scientists-to-attempt-dna-transplants\">approved\u003c/a> such experiments in that country.\u003c/p>\n\u003cp>But this remains \u003ca href=\"http://www.npr.org/sections/health-shots/2014/11/10/360342623/combining-the-dna-of-three-people-raises-ethical-questions\">controversial\u003c/a>, not only due to the fact that the resulting children would have DNA from three people. Because the transplanted DNA could be passed down for generations, critics fear it could accidentally introduce errors into the human gene pool that could create new diseases.\u003c/p>\n\u003cp>They also worry it would set a precedent that could open the door to creating designer babies, in which parents can pick and chose the traits of their children.\u003c/p>\n\u003cp>Because of such concerns, making any change in DNA that could be passed down for generations has long been considered off-limits.\u003c/p>\n\u003cp>The committee report acknowledged that making babies with DNA from three different people could have \"psychological and social effects\" on the offspring, including issues about their \"conception of identity.\"\u003c/p>\n\u003cp>In addition, the committee acknowledged the possibility that it could lead to attempts at genetic \"enhancements.\"\u003c/p>\n\u003cp>Such work would raise thorny regulatory issues, the committee noted. For example, the federal government is prohibited from funding research that involves destroying human embryos. As a result, \"even an agency request\" for data from such research in support of FDA approval \"could well be controversial,\" the report says.\u003c/p>\n\u003cp>Nevertheless, the committee says the potential benefits make the work worth pursuing with careful oversight.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cp>https://www.youtube.com/watch?v=zSgwJA-GOlg\u003c/p>\n\u003cp>The blood-testing firm Theranos has pushed back fiercely on The Wall Street Journal's reporting on a host of irregularities it found with the company's cheaper, less-intrusive blood-tests. In one \u003ca href=\"https://www.theranos.com/news/posts/statement-from-theranos-5\" target=\"_blank\">statement\u003c/a>, Theranos called a particular story \"inaccurate, misleading and defamatory.\"\u003c/p>\n\u003cp>So we thought this long interview with the Journal reporter who's written those stories was interesting. John Carreyrou appeared last week on the video podcast \"This Week in Startups,\" hosted by investor and entrepreneur Jason Calicanis. In the interview, Carreyrou defends his reporting and recaps some of his findings. He also says he repeatedly \u003ca href=\"https://www.youtube.com/watch?v=LqEmGEKFMxY&ab_channel=ThisWeekInStartups\" target=\"_blank\">tried to interview Theranos founder Elizabeth Holmes\u003c/a> but was rebuffed. You can see \u003ca href=\"https://www.youtube.com/user/ThisWeekIn/videos?&ab_channel=ThisWeekInStartups\" target=\"_blank\">selected clips from the interview here\u003c/a>, including one in which he talks about the \u003ca href=\"https://www.youtube.com/watch?v=RPwj4WJMbFg&ab_channel=ThisWeekInStartups\" target=\"_blank\">Journal's vetting process\u003c/a>.\u003c/p>\n\u003cp>Keep in mind Calicanis himself is a big critic of Theranos. He is not the most objective interviewer. (And you'll also have to sit through some ads.) Also keep in mind, again, that Theranos denies the claims made in the reports, which include allegations that the company hid test results and data that cast doubt on the accuracy of its technology.\u003c/p>\n\u003cp>\u003cstrong>To Recap...\u003c/strong>\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>For those unfamiliar with the story:\u003c/p>\n\u003cp>Last year, Theranos was valued at $9 billion, making then 31-year-old founder Elizabeth Holmes the world's youngest female billionaire, according to \u003ca href=\"http://www.forbes.com/sites/matthewherper/2015/07/15/giving-theranos-a-few-tests/#1448085d1721\" target=\"_blank\">Forbes\u003c/a>. Driving the investor rush: The company's claim that it could provide cheaper, less-intrusive blood tests.\u003c/p>\n\u003cp>But in a foreshadowing of what was to come, Forbes science and medicine reporter Matthew Herper wrote: \"How much is real and how much is hype? ... I still have no idea how Theranos’ technology works.\"\u003c/p>\n\u003cp>Nobody outside the company knew either. Now, the consensus leans more toward \"hype\" than \"real,\" thanks to Carryrou's \u003ca href=\"https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=wall+street+journal+theranos\" target=\"_blank\">stories \u003c/a>and a federal government's inspection finding that the company's Newark, California lab posed \"immediate jeopardy\" to patients.\u003c/p>\n\u003cp>Theranos says the lab is under new management and that it's remediated problems there. It has until Friday to respond to the Centers for Medicare & Medicaid Services with a plan to correct deficiencies at the lab. CMS says a report will be released after that plan is reviewed and accepted, but it doesn't have a timeframe for when that will be.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Theranos has declined to say if it will make its plan public.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\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/zSgwJA-GOlg'\n title='//www.youtube.com/embed/zSgwJA-GOlg'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>The blood-testing firm Theranos has pushed back fiercely on The Wall Street Journal's reporting on a host of irregularities it found with the company's cheaper, less-intrusive blood-tests. In one \u003ca href=\"https://www.theranos.com/news/posts/statement-from-theranos-5\" target=\"_blank\">statement\u003c/a>, Theranos called a particular story \"inaccurate, misleading and defamatory.\"\u003c/p>\n\u003cp>So we thought this long interview with the Journal reporter who's written those stories was interesting. John Carreyrou appeared last week on the video podcast \"This Week in Startups,\" hosted by investor and entrepreneur Jason Calicanis. In the interview, Carreyrou defends his reporting and recaps some of his findings. He also says he repeatedly \u003ca href=\"https://www.youtube.com/watch?v=LqEmGEKFMxY&ab_channel=ThisWeekInStartups\" target=\"_blank\">tried to interview Theranos founder Elizabeth Holmes\u003c/a> but was rebuffed. You can see \u003ca href=\"https://www.youtube.com/user/ThisWeekIn/videos?&ab_channel=ThisWeekInStartups\" target=\"_blank\">selected clips from the interview here\u003c/a>, including one in which he talks about the \u003ca href=\"https://www.youtube.com/watch?v=RPwj4WJMbFg&ab_channel=ThisWeekInStartups\" target=\"_blank\">Journal's vetting process\u003c/a>.\u003c/p>\n\u003cp>Keep in mind Calicanis himself is a big critic of Theranos. He is not the most objective interviewer. (And you'll also have to sit through some ads.) Also keep in mind, again, that Theranos denies the claims made in the reports, which include allegations that the company hid test results and data that cast doubt on the accuracy of its technology.\u003c/p>\n\u003cp>\u003cstrong>To Recap...\u003c/strong>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>For those unfamiliar with the story:\u003c/p>\n\u003cp>Last year, Theranos was valued at $9 billion, making then 31-year-old founder Elizabeth Holmes the world's youngest female billionaire, according to \u003ca href=\"http://www.forbes.com/sites/matthewherper/2015/07/15/giving-theranos-a-few-tests/#1448085d1721\" target=\"_blank\">Forbes\u003c/a>. Driving the investor rush: The company's claim that it could provide cheaper, less-intrusive blood tests.\u003c/p>\n\u003cp>But in a foreshadowing of what was to come, Forbes science and medicine reporter Matthew Herper wrote: \"How much is real and how much is hype? ... I still have no idea how Theranos’ technology works.\"\u003c/p>\n\u003cp>Nobody outside the company knew either. Now, the consensus leans more toward \"hype\" than \"real,\" thanks to Carryrou's \u003ca href=\"https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=wall+street+journal+theranos\" target=\"_blank\">stories \u003c/a>and a federal government's inspection finding that the company's Newark, California lab posed \"immediate jeopardy\" to patients.\u003c/p>\n\u003cp>Theranos says the lab is under new management and that it's remediated problems there. It has until Friday to respond to the Centers for Medicare & Medicaid Services with a plan to correct deficiencies at the lab. CMS says a report will be released after that plan is reviewed and accepted, but it doesn't have a timeframe for when that will be.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Theranos has declined to say if it will make its plan public.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Imagine if instead of schlepping across town to your physician's office, spending a half-hour in the waiting room leafing through a year-old National Geographic, and spending just long enough with the doc to get a prescription, you could instead request a personal house call in the form of a hologram. Or talk to an artificial representation not only possessing your doctor's knowledge, but all the research contained in medical databases.\u003c/p>\n\u003caside class=\"“pullquote alignright\">\"We can take care of more and more patients virtually and save the brick and mortar visits for those that really need it.”\u003c/aside>\n\u003cp>Well, if the “virtual care clinic,” now in the works at the University of Southern California, opens for business sometime later this year, we're going to find out.\u003c/p>\n\u003cp>The plan is to combine real physicians, their visual representations, and artificial intelligence into one badass caregiver, providing patients access to not only a wealth of routine and specialized information, but also to virtual doctors who don’t get cranky when you ask, “So can I, like, die from this?\" Patients will transmit information about their physical condition through body sensors.\u003c/p>\n\u003cp>What will this look like? Well, take a look at the videos below, where you'll see patients who want more information about their condition or treatment as they connect with electronic versions of their physicians.\u003c/p>\n\u003cp>In the first demo, a video version of a real doctor asks the patient which treatment outcomes concern him the most. When he chooses “survival mortality,” the \"doctor\" searches its database and pulls studies of patients with a similar profile. She then reports that a new medication for his condition reduced mortality 9 percent more than an older treatment. That, coupled with a reduced risk of stroke, leads the virtual physician to recommend the newer medication.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>https://www.youtube.com/watch?v=1YOX9Bh3jR8\u003c/p>\n\u003cp>In this demo, an avatar with a computer-generated voice gives a patient with prostate cancer the mortality rate for radical prostatectomy as compared to the rate for active surveillance.\u003c/p>\n\u003cp>https://www.youtube.com/watch?v=Mt8Hfy9A8zg\u003c/p>\n\u003cp>And apparently holograms are also on the table ...\u003c/p>\n\u003cp>https://www.youtube.com/watch?v=61xd07vxev8\u003c/p>\n\u003cp>“By allowing people to access doctors on their own time, it can create an interaction that’s been missing from medicine,” said Dr. Leslie Saxon, the executive director of the University of Southern California's Center for Body Computing, which is creating the clinic in partnership with the USC Institute for Creative Technologies and Keck Medicine of USC. In addition, there are eight “\u003ca href=\"http://www.prnewswire.com/news-releases/the-next-level-of-on-demand-expert-medical-care-is-here-usc-center-for-body-computing-announces-its-virtual-care-clinic-vcc-in-collaboration-with-eight-strategic-partners-for-an-anytime-anywhere-disruptive-health-care-model--300210442.html\" target=\"_blank\">foundational partners\u003c/a>,\" which the clinic announced last week.\u003c/p>\n\u003cp>Saxon believes this sort of remote, virtual care will become the \"dominant global health care solution\" because of the benefits it will provide for physicians, patients and the bottom line.\u003c/p>\n\u003cp>By “virtualizing” the knowledge set of experts, she said, “we can provide access to [them] at a fraction of the cost. We can take care of more and more patients virtually and save the brick and mortar visits for those that really need it.”\u003c/p>\n\u003cp>Saxon also thinks enabling appointments from anywhere patients can use a smartphone will relieve many of the burdens involved in traditional encounters, including having to leave work to travel to the doctor and the inability to have all concerns addressed in a time-sensitive, sometimes intimidating environment.\u003c/p>\n\u003cp>Then there's the democratizing aspect.\u003c/p>\n\u003cp>“There are only so many medical experts in the world,” Saxon told the Voice of America in an \u003ca href=\"http://www.voanews.com/content/virtual-medical-clinic-equalize-health-care/3168894.html\" target=\"_blank\">interview\u003c/a>, \"and we're never going to have enough to supply the need of the entire world. So we can clone, if you will, many of the experts to provide care anywhere anytime, without borders.\"\u003c/p>\n\u003cp>\u003cstrong>What About The Human Element?\u003c/strong>\u003c/p>\n\u003cp>All right. Do I really want a computer to compel me to “say ahh”?\u003c/p>\n\u003cp>“We’re not saying you don’t need [human interaction],” Saxon said. “But you don’t need it for everything. What people like is convenience and continuous access.”\u003c/p>\n\u003cp>Saxon said the early data shows patients have responded well to this type of interaction.\u003c/p>\n\u003cp>One of the reasons, perhaps: a virtual doctor doesn’t get annoyed.\u003c/p>\n\u003cp>“I’m a cardiologist,\" Saxon says \"I see 30 patients at a clinic, I’m describing the same information a lot. Do you think I’m as fresh at 4 p.m. as I am at 8 a.m.? I like the idea of being able to standardize my behavior and conduct. \"\u003c/p>\n\u003cp>\u003cstrong>What About Privacy?\u003c/strong>\u003c/p>\n\u003cp>Considering that all these interactions would take place online, I asked Saxon how the clinic could ensure privacy.\u003c/p>\n\u003cp>“We work only with HIPAA compliant partners that have a high level of security required for the transfer and storage of digital health data,” she said\u003c/p>\n\u003cp>\u003cb>What Do Doctors Think About \"Being Virtualized?\"\u003c/b>\u003c/p>\n\u003cp>When I described the virtual clinic to the AMA, it seemed a bit like, \"that's a new one on us.\" But I sent some info and they emailed me back a response, \"While the AMA has not reviewed the virtual health service that you describe, we would be interested in how this health care delivery model is addressing some of the challenges that occur in telehealth: no serious history-taking, no patient evaluation to guide a proper diagnosis, no counseling, no monitoring or assessment of a treatment, and no semblance of a true patient-physician relationship.\"\u003c/p>\n\u003cp>I also wondered how a regular doctor, not particularly connected to the tech world and who has seen a ton of patients, would react to the ideas in play here. My pal Dan O’Connell, an assistant professor of family medicine at Montefiore Medical Center in the Bronx, New York, fit the bill. He sees about 25 patients per week and supervises residents who treat about 45 more patients. Most of this clientele is low-income.\u003c/p>\n\u003cp>He wasn’t particularly impressed by the demonstration videos. One of the main tasks of any medical interaction, he said, is to see if the patient actually understands what you are talking about.\u003c/p>\n\u003cp>“The virtual doctors are only some pre-set scripts with no interaction or intelligence at all,” he said. “Most effective education is an interactive conversation.\"\u003c/p>\n\u003cp>He thought the demonstration of the doctor providing the respective mortality rates for Coumadin and New Oral Anticoagulants showed the system’s limitations.\u003c/p>\n\u003cp>“Because the \u003cem>conversation\u003c/em> is so central to the doctor-patient relationship, this particular example is useless -- it spends a lot of time and clicks to basically say, ‘the very expensive one is slightly better’ without individualizing.”\u003c/p>\n\u003cp>“I'm sure they will get better at this,” he said, “but the early basic assumptions -- that patients want an avatar to translate epidemiology into high school math -- misses what people want from their health provider.”\u003c/p>\n\u003cp>I guess we'll have to see how patients respond. If enough like this model of care, well ...\u003c/p>\n\u003cp>Remember this guy from Star Trek Voyager?\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>https://www.youtube.com/watch?v=vr0OHhA6rGs\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Imagine if instead of schlepping across town to your physician's office, spending a half-hour in the waiting room leafing through a year-old National Geographic, and spending just long enough with the doc to get a prescription, you could instead request a personal house call in the form of a hologram. Or talk to an artificial representation not only possessing your doctor's knowledge, but all the research contained in medical databases.\u003c/p>\n\u003caside class=\"“pullquote alignright\">\"We can take care of more and more patients virtually and save the brick and mortar visits for those that really need it.”\u003c/aside>\n\u003cp>Well, if the “virtual care clinic,” now in the works at the University of Southern California, opens for business sometime later this year, we're going to find out.\u003c/p>\n\u003cp>The plan is to combine real physicians, their visual representations, and artificial intelligence into one badass caregiver, providing patients access to not only a wealth of routine and specialized information, but also to virtual doctors who don’t get cranky when you ask, “So can I, like, die from this?\" Patients will transmit information about their physical condition through body sensors.\u003c/p>\n\u003cp>What will this look like? Well, take a look at the videos below, where you'll see patients who want more information about their condition or treatment as they connect with electronic versions of their physicians.\u003c/p>\n\u003cp>In the first demo, a video version of a real doctor asks the patient which treatment outcomes concern him the most. When he chooses “survival mortality,” the \"doctor\" searches its database and pulls studies of patients with a similar profile. She then reports that a new medication for his condition reduced mortality 9 percent more than an older treatment. That, coupled with a reduced risk of stroke, leads the virtual physician to recommend the newer medication.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\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/1YOX9Bh3jR8'\n title='//www.youtube.com/embed/1YOX9Bh3jR8'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>In this demo, an avatar with a computer-generated voice gives a patient with prostate cancer the mortality rate for radical prostatectomy as compared to the rate for active surveillance.\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/Mt8Hfy9A8zg'\n title='//www.youtube.com/embed/Mt8Hfy9A8zg'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>And apparently holograms are also on the table ...\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/61xd07vxev8'\n title='//www.youtube.com/embed/61xd07vxev8'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>“By allowing people to access doctors on their own time, it can create an interaction that’s been missing from medicine,” said Dr. Leslie Saxon, the executive director of the University of Southern California's Center for Body Computing, which is creating the clinic in partnership with the USC Institute for Creative Technologies and Keck Medicine of USC. In addition, there are eight “\u003ca href=\"http://www.prnewswire.com/news-releases/the-next-level-of-on-demand-expert-medical-care-is-here-usc-center-for-body-computing-announces-its-virtual-care-clinic-vcc-in-collaboration-with-eight-strategic-partners-for-an-anytime-anywhere-disruptive-health-care-model--300210442.html\" target=\"_blank\">foundational partners\u003c/a>,\" which the clinic announced last week.\u003c/p>\n\u003cp>Saxon believes this sort of remote, virtual care will become the \"dominant global health care solution\" because of the benefits it will provide for physicians, patients and the bottom line.\u003c/p>\n\u003cp>By “virtualizing” the knowledge set of experts, she said, “we can provide access to [them] at a fraction of the cost. 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So we can clone, if you will, many of the experts to provide care anywhere anytime, without borders.\"\u003c/p>\n\u003cp>\u003cstrong>What About The Human Element?\u003c/strong>\u003c/p>\n\u003cp>All right. Do I really want a computer to compel me to “say ahh”?\u003c/p>\n\u003cp>“We’re not saying you don’t need [human interaction],” Saxon said. “But you don’t need it for everything. What people like is convenience and continuous access.”\u003c/p>\n\u003cp>Saxon said the early data shows patients have responded well to this type of interaction.\u003c/p>\n\u003cp>One of the reasons, perhaps: a virtual doctor doesn’t get annoyed.\u003c/p>\n\u003cp>“I’m a cardiologist,\" Saxon says \"I see 30 patients at a clinic, I’m describing the same information a lot. Do you think I’m as fresh at 4 p.m. as I am at 8 a.m.? I like the idea of being able to standardize my behavior and conduct. \"\u003c/p>\n\u003cp>\u003cstrong>What About Privacy?\u003c/strong>\u003c/p>\n\u003cp>Considering that all these interactions would take place online, I asked Saxon how the clinic could ensure privacy.\u003c/p>\n\u003cp>“We work only with HIPAA compliant partners that have a high level of security required for the transfer and storage of digital health data,” she said\u003c/p>\n\u003cp>\u003cb>What Do Doctors Think About \"Being Virtualized?\"\u003c/b>\u003c/p>\n\u003cp>When I described the virtual clinic to the AMA, it seemed a bit like, \"that's a new one on us.\" But I sent some info and they emailed me back a response, \"While the AMA has not reviewed the virtual health service that you describe, we would be interested in how this health care delivery model is addressing some of the challenges that occur in telehealth: no serious history-taking, no patient evaluation to guide a proper diagnosis, no counseling, no monitoring or assessment of a treatment, and no semblance of a true patient-physician relationship.\"\u003c/p>\n\u003cp>I also wondered how a regular doctor, not particularly connected to the tech world and who has seen a ton of patients, would react to the ideas in play here. My pal Dan O’Connell, an assistant professor of family medicine at Montefiore Medical Center in the Bronx, New York, fit the bill. He sees about 25 patients per week and supervises residents who treat about 45 more patients. Most of this clientele is low-income.\u003c/p>\n\u003cp>He wasn’t particularly impressed by the demonstration videos. 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If enough like this model of care, well ...\u003c/p>\n\u003cp>Remember this guy from Star Trek Voyager?\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cp>President Barack Obama will ask Congress for $755 million for cancer research in his upcoming budget, the White House said Monday, bringing the total price tag for Vice President Joe Biden's cancer \"moonshot\" to $1 billion.\u003c/p>\n\u003cp>Research into immunotherapy, combination therapy and early detection techniques will be at the center of new programs the administration hopes to create at the National Institutes of Health and the Food and Drug Administration. Vaccines to prevent viruses that cause cancer are another focus, officials said, laying out for the first time how Biden will seek to fulfill his goal of doubling the rate of progress toward curing cancer.\u003c/p>\n\u003cp>\"Our job is to clear out the bureaucratic hurdles, and let science happen,\" Biden said in an email to supporters.\u003c/p>\n\u003cp>With less than a year left in office, Biden is working to kick start federal engagement on curing cancer, which claimed his 46-year-old son last year. Obama, in his State of the Union address, gave the effort his stamp of approval.\u003c/p>\n\u003cp>Obama on Monday attended the first meeting of a new federal task force — chaired by Biden — bringing various health and scientific agencies together with the Pentagon and others. Biden told the assembled officials, which included the secretaries of Energy and of Health and Human Services, that achieving the goal would \"take a whole-of-government approach.\"\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The $755 million request, which Congress must approve, will come in Obama's final budget proposal Feb. 9. Those funds would join another $195 million in new cancer funding Congress approved in its budget deal late last year. The White House said the Defense and Veterans Affairs departments would also boost investment in cancer research.\u003c/p>\n\u003cp>Biden has been urging more sharing of data, trial results and other information between institutions working on cancer. Biden hasn't explained how he'll measure whether he's doubled the rate of progress on a cure; officials said they were developing those metrics.\u003c/p>\n\u003cp>Dr. Michael Caligiuri, an Ohio State University cancer researcher who has met with Biden, said a $1 billion investment could have a major impact if used for programs selected by rigorous, external peer review — not just by the government.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"We've tried that before in our government agencies,\" Caligiuri said in an interview. \"It doesn't work well.\"\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The $755 million request, which Congress must approve, will come in Obama's final budget proposal Feb. 9. Those funds would join another $195 million in new cancer funding Congress approved in its budget deal late last year. The White House said the Defense and Veterans Affairs departments would also boost investment in cancer research.\u003c/p>\n\u003cp>Biden has been urging more sharing of data, trial results and other information between institutions working on cancer. Biden hasn't explained how he'll measure whether he's doubled the rate of progress on a cure; officials said they were developing those metrics.\u003c/p>\n\u003cp>Dr. Michael Caligiuri, an Ohio State University cancer researcher who has met with Biden, said a $1 billion investment could have a major impact if used for programs selected by rigorous, external peer review — not just by the government.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"We've tried that before in our government agencies,\" Caligiuri said in an interview. \"It doesn't work well.\"\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Pennsylvania-based Independence Blue Cross’ announcement that it will cover a complex type of genetic testing for some cancer patients thrusts the insurer into an ongoing debate about how to handle an increasing array of these expensive tests.\u003c/p>\n\u003cp>Independence — with its approximately 3 million members — became the largest insurer to cover whole genome sequencing for select cancer patients. The analysis looks at the entire sequence of each tumor’s DNA and identifies mutated genes. Physicians can request this sequencing for children with tumors, patients with rare cancers, people with a type of breast cancer called triple negative and patients who have exhausted conventional therapies for metastatic cancer.\u003c/p>\n\u003cp>While the hope is the results will help patients and their doctors pinpoint the best treatments based on genetic differences, there may not be any such drug regimens yet available. It’s also unclear whether the information the tests provide make any difference in a patient’s treatment and prognosis.\u003c/p>\n\u003cp>“Only some of the information is useful,” said Donna Messner, vice president and senior research director with the Center for Medical Technology Policy, a nonprofit organization working with insurers, genetic test companies, patient groups and clinicians to try to develop a common approach to insurance coverage. “That’s a challenge for payers.”\u003c/p>\n\u003cp>Cost is also a factor. Estimates of national spending on genetic and molecular testing vary, partly because there are so many different types of tests for different conditions. A 2012 analysis by UnitedHealth Group of national trends estimated the U.S. could see overall spending on genetic tests reach between $15 billion and $25 billion by 2021, up from $5 billion in 2010.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Despite the uncertainties, Independence CEO Daniel J. Hilferty said the insurer felt it was important to try to help some members learn more about their disease. He declined to say how much the program would cost but said the expected number of patients would be small, perhaps in the hundreds.\u003c/p>\n\u003cp>“Let’s jump in the pool,” said Hilferty of the decision to cover the complex test for a limited group of cancer types. “If evidence shows it works and is helpful, then we can do more.”\u003c/p>\n\u003cp>The testing “identifies genes for which there may be a target [treatment] available today — or maybe a target tomorrow when new drugs come to market,” said Don Liss, Independence’s medical director.\u003c/p>\n\u003cp>\u003cstrong>What Can Be Found In The Sequence?\u003c/strong>\u003c/p>\n\u003cp>Overall, genetic testing is available for more than 2,500 conditions and can be used to identify an inherited risk of a disease, the presence of a disease or whether a particular drug treatment might be effective against the specific disease.\u003c/p>\n\u003cp>Some types of genetic tests are already commonly covered by insurers. Patients diagnosed with breast cancer, for example, get a test that determines whether their tumors express a type of protein against which a widely available anti-cancer drug is effective.\u003c/p>\n\u003cp>The testing that Independence will cover goes further — outlining a tumor’s entire genetic makeup and searching for anomalies in more than 20,000 genes. Medicare and most private insurers do not cover whole genome testing for cancer tumors.\u003c/p>\n\u003cp>UnitedHealth Group in December \u003ca href=\"https://www.bostonglobe.com/business/2015/12/21/cambridge-genetic-testing-company-inks-deal-with-unitedhealth-stock-rises/UhbUIPbCX6IvNx4EQphQTM/story.html\" target=\"_blank\">said it would cover whole genome profiling\u003c/a> for stage IV non-small cell lung cancer, but not the other cancers that Independence will cover.\u003c/p>\n\u003cp>Priority Health, a small insurer in Michigan last year \u003ca href=\"https://www.priorityhealth.com/provider/manual/auths/~/media/documents/medical-policies/91609.pdf\" target=\"_blank\">began covering whole genome sequencing of tumors\u003c/a> for certain late-stage, complex cancers in an effort to help target treatments. Patient advocacy groups, particularly those for people with lung cancer, are pushing hard for such testing, \u003ca href=\"http://www.lung-map.org/media/press/%E2%80%9Cdon%E2%80%99t-guess-test%E2%80%9D-campaign-aims-educate-patients-about-comprehensive-genomic-testing\" target=\"_blank\">part of a campaign with the slogan, “Don’t guess. Test.”\u003c/a>\u003c/p>\n\u003cp>“A lot of insurers decide on a case-by-case basis about these tests,” said Lynn Matrisian, vice president of scientific and medical affairs for the Pancreatic Cancer Action Network, a patient advocacy group. “Knowing that it’s covered, I think goes a long way in reassuring the patient that they will be able to get some of these therapies.”\u003c/p>\n\u003cp>The hope is that the analysis will help determine the subset of the type of cancer a patient has or detect characteristics of another type of cancer. Then oncologists could look for drugs that target the patient’s particular genetic profile. Sometimes that could involve prescribing a drug that is “off label,” a common practice in which a doctor prescribes a drug for a condition for which it was not initially approved by federal officials. A breast cancer drug, for example, might prove useful in another type of cancer.\u003c/p>\n\u003cp>While researchers believe the efforts are promising, evidence is scant. \u003ca href=\"http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(15)00188-6/abstract\" target=\"_blank\">A study done in France\u003c/a> found that “off label” use didn’t prove more effective than standard chemotherapy.\u003c/p>\n\u003cp>Still, as scientists increasingly study the genetic variations in cancer, researchers say more patients should have their tumors analyzed with whole genome sequencing — and the data gathered and shared. That could speed the development of new drugs, vaccines or combinations of treatments, part of the current focus on “precision medicines” and President Obama’s “moon shot on cancer.”\u003c/p>\n\u003cp>“The key to all this is if we’re going to advance this whole personalized medicine thing efficiently, we have to get all the insurance companies working in some kind of similar policy … and to incentivize standardized data that can be shared,” said Sean Tunis, founder of the Center for Medical Technology Policy.\u003c/p>\n\u003cp>The collaborative has recommended changes in coverage guidelines so that tests that assess five to 50 genes would no longer be considered “investigational” and would be covered by all U.S. health plans.\u003c/p>\n\u003cp>Patients who want whole genome sequencing analysis even if it’s not covered by their insurer can sometimes get it done at an academic medical center as part of a research trial, or pay for it themselves. Prices can run anywhere from $1,000 to $5,000 or more, advocacy groups say.\u003c/p>\n\u003cp>When Tetyana Murza’s husband was diagnosed with pancreatic cancer three years ago, their insurer would not cover a whole genome analysis of the tumor. So they spent $2,000 to pay for it.\u003c/p>\n\u003cp>“When you pretty much have a terminal disease … you’re looking for all the options,” said Murza, managing director at the Genetic Alliance, a Washington-based coalition of disease advocacy groups, academic institutions and private companies. “You always have a hope that something will come up. Doing sequencing was that for us … we’re hoping to find those targets we can attack with medicine.”\u003c/p>\n\u003cp>They learned that her husband, Michael Mariotte, has a gene mutation that is not standard for pancreatic cancer but is more commonly seen in breast and some other types of cancer. She said there is a drug approved for another type of cancer that might work on that mutation. They haven’t tried it yet.\u003c/p>\n\u003cp>Instead, they’ve gone through several rounds of chemotherapy commonly used for pancreatic cancer. Now, there’s another new drug on the market for pancreatic cancer, and one their insurer says they must try first before moving on to the other.\u003c/p>\n\u003cp>Even though it hasn’t changed the course of his treatment, Murza says her husband is glad they did the sequencing: “He says it’s still good for him as a cancer patient to know there is another target, that something else can come up.”\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.”\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Pennsylvania-based Independence Blue Cross’ announcement that it will cover a complex type of genetic testing for some cancer patients thrusts the insurer into an ongoing debate about how to handle an increasing array of these expensive tests.\u003c/p>\n\u003cp>Independence — with its approximately 3 million members — became the largest insurer to cover whole genome sequencing for select cancer patients. The analysis looks at the entire sequence of each tumor’s DNA and identifies mutated genes. Physicians can request this sequencing for children with tumors, patients with rare cancers, people with a type of breast cancer called triple negative and patients who have exhausted conventional therapies for metastatic cancer.\u003c/p>\n\u003cp>While the hope is the results will help patients and their doctors pinpoint the best treatments based on genetic differences, there may not be any such drug regimens yet available. It’s also unclear whether the information the tests provide make any difference in a patient’s treatment and prognosis.\u003c/p>\n\u003cp>“Only some of the information is useful,” said Donna Messner, vice president and senior research director with the Center for Medical Technology Policy, a nonprofit organization working with insurers, genetic test companies, patient groups and clinicians to try to develop a common approach to insurance coverage. “That’s a challenge for payers.”\u003c/p>\n\u003cp>Cost is also a factor. Estimates of national spending on genetic and molecular testing vary, partly because there are so many different types of tests for different conditions. A 2012 analysis by UnitedHealth Group of national trends estimated the U.S. could see overall spending on genetic tests reach between $15 billion and $25 billion by 2021, up from $5 billion in 2010.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Despite the uncertainties, Independence CEO Daniel J. Hilferty said the insurer felt it was important to try to help some members learn more about their disease. He declined to say how much the program would cost but said the expected number of patients would be small, perhaps in the hundreds.\u003c/p>\n\u003cp>“Let’s jump in the pool,” said Hilferty of the decision to cover the complex test for a limited group of cancer types. “If evidence shows it works and is helpful, then we can do more.”\u003c/p>\n\u003cp>The testing “identifies genes for which there may be a target [treatment] available today — or maybe a target tomorrow when new drugs come to market,” said Don Liss, Independence’s medical director.\u003c/p>\n\u003cp>\u003cstrong>What Can Be Found In The Sequence?\u003c/strong>\u003c/p>\n\u003cp>Overall, genetic testing is available for more than 2,500 conditions and can be used to identify an inherited risk of a disease, the presence of a disease or whether a particular drug treatment might be effective against the specific disease.\u003c/p>\n\u003cp>Some types of genetic tests are already commonly covered by insurers. Patients diagnosed with breast cancer, for example, get a test that determines whether their tumors express a type of protein against which a widely available anti-cancer drug is effective.\u003c/p>\n\u003cp>The testing that Independence will cover goes further — outlining a tumor’s entire genetic makeup and searching for anomalies in more than 20,000 genes. Medicare and most private insurers do not cover whole genome testing for cancer tumors.\u003c/p>\n\u003cp>UnitedHealth Group in December \u003ca href=\"https://www.bostonglobe.com/business/2015/12/21/cambridge-genetic-testing-company-inks-deal-with-unitedhealth-stock-rises/UhbUIPbCX6IvNx4EQphQTM/story.html\" target=\"_blank\">said it would cover whole genome profiling\u003c/a> for stage IV non-small cell lung cancer, but not the other cancers that Independence will cover.\u003c/p>\n\u003cp>Priority Health, a small insurer in Michigan last year \u003ca href=\"https://www.priorityhealth.com/provider/manual/auths/~/media/documents/medical-policies/91609.pdf\" target=\"_blank\">began covering whole genome sequencing of tumors\u003c/a> for certain late-stage, complex cancers in an effort to help target treatments. Patient advocacy groups, particularly those for people with lung cancer, are pushing hard for such testing, \u003ca href=\"http://www.lung-map.org/media/press/%E2%80%9Cdon%E2%80%99t-guess-test%E2%80%9D-campaign-aims-educate-patients-about-comprehensive-genomic-testing\" target=\"_blank\">part of a campaign with the slogan, “Don’t guess. Test.”\u003c/a>\u003c/p>\n\u003cp>“A lot of insurers decide on a case-by-case basis about these tests,” said Lynn Matrisian, vice president of scientific and medical affairs for the Pancreatic Cancer Action Network, a patient advocacy group. “Knowing that it’s covered, I think goes a long way in reassuring the patient that they will be able to get some of these therapies.”\u003c/p>\n\u003cp>The hope is that the analysis will help determine the subset of the type of cancer a patient has or detect characteristics of another type of cancer. Then oncologists could look for drugs that target the patient’s particular genetic profile. Sometimes that could involve prescribing a drug that is “off label,” a common practice in which a doctor prescribes a drug for a condition for which it was not initially approved by federal officials. A breast cancer drug, for example, might prove useful in another type of cancer.\u003c/p>\n\u003cp>While researchers believe the efforts are promising, evidence is scant. \u003ca href=\"http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(15)00188-6/abstract\" target=\"_blank\">A study done in France\u003c/a> found that “off label” use didn’t prove more effective than standard chemotherapy.\u003c/p>\n\u003cp>Still, as scientists increasingly study the genetic variations in cancer, researchers say more patients should have their tumors analyzed with whole genome sequencing — and the data gathered and shared. That could speed the development of new drugs, vaccines or combinations of treatments, part of the current focus on “precision medicines” and President Obama’s “moon shot on cancer.”\u003c/p>\n\u003cp>“The key to all this is if we’re going to advance this whole personalized medicine thing efficiently, we have to get all the insurance companies working in some kind of similar policy … and to incentivize standardized data that can be shared,” said Sean Tunis, founder of the Center for Medical Technology Policy.\u003c/p>\n\u003cp>The collaborative has recommended changes in coverage guidelines so that tests that assess five to 50 genes would no longer be considered “investigational” and would be covered by all U.S. health plans.\u003c/p>\n\u003cp>Patients who want whole genome sequencing analysis even if it’s not covered by their insurer can sometimes get it done at an academic medical center as part of a research trial, or pay for it themselves. Prices can run anywhere from $1,000 to $5,000 or more, advocacy groups say.\u003c/p>\n\u003cp>When Tetyana Murza’s husband was diagnosed with pancreatic cancer three years ago, their insurer would not cover a whole genome analysis of the tumor. So they spent $2,000 to pay for it.\u003c/p>\n\u003cp>“When you pretty much have a terminal disease … you’re looking for all the options,” said Murza, managing director at the Genetic Alliance, a Washington-based coalition of disease advocacy groups, academic institutions and private companies. “You always have a hope that something will come up. Doing sequencing was that for us … we’re hoping to find those targets we can attack with medicine.”\u003c/p>\n\u003cp>They learned that her husband, Michael Mariotte, has a gene mutation that is not standard for pancreatic cancer but is more commonly seen in breast and some other types of cancer. She said there is a drug approved for another type of cancer that might work on that mutation. They haven’t tried it yet.\u003c/p>\n\u003cp>Instead, they’ve gone through several rounds of chemotherapy commonly used for pancreatic cancer. Now, there’s another new drug on the market for pancreatic cancer, and one their insurer says they must try first before moving on to the other.\u003c/p>\n\u003cp>Even though it hasn’t changed the course of his treatment, Murza says her husband is glad they did the sequencing: “He says it’s still good for him as a cancer patient to know there is another target, that something else can come up.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"disqusTitle": "U.K. Regulator Gives Go-Ahead for Scientists to Edit Genes In Human Embryos",
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"content": "\u003cp>A team of British scientists received approval by U.K.'s fertility regulator to edit genes in human embryos.\u003c/p>\n\u003cp>\"It is the first time a country has considered the DNA-altering technique in embryos and approved it,\" \u003ca href=\"http://www.bbc.com/news/health-35459054\">the BBC reports\u003c/a>.\u003c/p>\n\u003cp>[contextly_sidebar id=\"jKHEpLh0Cg2weWV6PR6xfW8fhqiQnFHK\"]Now that Britain's Human Fertilisation and Embryology Authority (HFEA) has given the green light, the team from the Francis Crick Institute must seek approval from a \u003ca href=\"http://www.hra.nhs.uk/about-the-hra/our-committees/research-ethics-committees-recs/\">U.K. research-ethics committee\u003c/a>.\u003c/p>\n\u003cp>\u003ca href=\"https://www.crick.ac.uk/news/science-news/2016/02/01/hfea-decision/\">The institute says\u003c/a> its research could begin within a few months.\u003c/p>\n\u003cp>The aim of the project is to shed light on \"the genes human embryos need to develop successfully,\" the Francis Crick Institute says in a statement.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The research could improve embryo development after in vitro fertilization or advance treatment of infertility.\u003c/p>\n\u003cp>\"The work carried out at the Crick will be for research purposes and will look into the first seven days of a fertilized egg's development (from a single cell to around 250 cells),\" the institute says. The researchers will use donated, surplus embryos from IVF treatments.\u003c/p>\n\u003cp>\"The decision permits [Crick team leader Kathy] Niakan to study the embryos for 14 days for research purposes only,\" \u003ca href=\"https://www.theguardian.com/science/2016/feb/01/human-embryo-genetic-modify-regulator-green-light-research\">The Guardian reports\u003c/a>. \"It does not permit them to be implanted into women.\"\u003c/p>\n\u003cp>This kind of research is possible because of a \u003ca href=\"http://www.npr.org/sections/health-shots/2015/12/28/460705645/gene-editing-tool-hailed-as-a-breakthrough-and-it-really-is-one\">technique called CRISPR-Cas9\u003c/a>, which was first demonstrated three years ago. It allows scientists to cut DNA with precision and replace it, making it much easier and cheaper to modify genes. This video from MIT's McGovern Institute for Brain Research shows how it works:\u003cbr>\n\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe width=\"560\" height=\"315\" src=\"https://www.youtube.com/embed/2pp17E4E-O8\" frameborder=\"0\" scrolling=\"yes\" class=\"iframe-class\">\u003c/iframe>\u003c/p>\n\u003cp>The machine has revolutionized genetic engineering but has also provoked ethical questions about what scientists should be allowed to do with it. NPR's Rob Stein \u003ca href=\"http://www.npr.org/sections/health-shots/2015/12/03/458212497/scientists-debate-how-far-to-go-in-editing-human-genes\">has reported on the heated debate\u003c/a>:\u003c/p>\n\u003cblockquote>\u003cp>\"Scientists believe the new techniques will produce many benefits, such as finding new ways to prevent and treat diseases, including AIDS, cancer and Alzheimer's.\u003c/p>\n\u003cp>\"But the ability to edit DNA so easily is also raising many fears, especially about the prospect of changing human DNA from the very start. Scientists explored how altering sperm, eggs and embryos could yield important new insights into basic human biology and development, and help prevent and treat many inherited diseases, including \u003ca href=\"http://ghr.nlm.nih.gov/condition/huntington-disease\">Huntington's disease\u003c/a>, cystic fibrosis and \u003ca href=\"http://ghr.nlm.nih.gov/condition/tay-sachs-disease\">Tay-Sachs disease\u003c/a>.\u003c/p>\n\u003cp>\"But altering the so-called \u003ca href=\"http://ghr.nlm.nih.gov/glossary=germline\">germline\u003c/a> in this manner has long been considered off-limits. That's because such changes can be passed down to future generations. Mistakes could inadvertently introduce new diseases into the human gene pool.\"\u003c/p>\u003c/blockquote>\n\u003cp>And at the extreme end, Rob says \"another fear is that taking this step would open the door to designer babies\" — kids modified to be especially smart or attractive, for example.\u003c/p>\n\u003cp>Supporters of Monday's decision in the U.K. argue that it is \"balancing the benefits to research and ethical considerations,\" the \u003cem>Guardian\u003c/em> reports.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Sarah Norcross, director of Progress Educational Trust, told the newspaper that it represents \"a victory for level-headed regulation over moral panic.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=U.K.+Regulator+Gives+Go-Ahead+For+Scientists+To+Edit+Genes+In+Human+Embryos&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\" alt=\"\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>A team of British scientists received approval by U.K.'s fertility regulator to edit genes in human embryos.\u003c/p>\n\u003cp>\"It is the first time a country has considered the DNA-altering technique in embryos and approved it,\" \u003ca href=\"http://www.bbc.com/news/health-35459054\">the BBC reports\u003c/a>.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>Now that Britain's Human Fertilisation and Embryology Authority (HFEA) has given the green light, the team from the Francis Crick Institute must seek approval from a \u003ca href=\"http://www.hra.nhs.uk/about-the-hra/our-committees/research-ethics-committees-recs/\">U.K. research-ethics committee\u003c/a>.\u003c/p>\n\u003cp>\u003ca href=\"https://www.crick.ac.uk/news/science-news/2016/02/01/hfea-decision/\">The institute says\u003c/a> its research could begin within a few months.\u003c/p>\n\u003cp>The aim of the project is to shed light on \"the genes human embryos need to develop successfully,\" the Francis Crick Institute says in a statement.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The research could improve embryo development after in vitro fertilization or advance treatment of infertility.\u003c/p>\n\u003cp>\"The work carried out at the Crick will be for research purposes and will look into the first seven days of a fertilized egg's development (from a single cell to around 250 cells),\" the institute says. The researchers will use donated, surplus embryos from IVF treatments.\u003c/p>\n\u003cp>\"The decision permits [Crick team leader Kathy] Niakan to study the embryos for 14 days for research purposes only,\" \u003ca href=\"https://www.theguardian.com/science/2016/feb/01/human-embryo-genetic-modify-regulator-green-light-research\">The Guardian reports\u003c/a>. \"It does not permit them to be implanted into women.\"\u003c/p>\n\u003cp>This kind of research is possible because of a \u003ca href=\"http://www.npr.org/sections/health-shots/2015/12/28/460705645/gene-editing-tool-hailed-as-a-breakthrough-and-it-really-is-one\">technique called CRISPR-Cas9\u003c/a>, which was first demonstrated three years ago. It allows scientists to cut DNA with precision and replace it, making it much easier and cheaper to modify genes. This video from MIT's McGovern Institute for Brain Research shows how it works:\u003cbr>\n\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe width=\"560\" height=\"315\" src=\"https://www.youtube.com/embed/2pp17E4E-O8\" frameborder=\"0\" scrolling=\"yes\" class=\"iframe-class\">\u003c/iframe>\u003c/p>\n\u003cp>The machine has revolutionized genetic engineering but has also provoked ethical questions about what scientists should be allowed to do with it. NPR's Rob Stein \u003ca href=\"http://www.npr.org/sections/health-shots/2015/12/03/458212497/scientists-debate-how-far-to-go-in-editing-human-genes\">has reported on the heated debate\u003c/a>:\u003c/p>\n\u003cblockquote>\u003cp>\"Scientists believe the new techniques will produce many benefits, such as finding new ways to prevent and treat diseases, including AIDS, cancer and Alzheimer's.\u003c/p>\n\u003cp>\"But the ability to edit DNA so easily is also raising many fears, especially about the prospect of changing human DNA from the very start. Scientists explored how altering sperm, eggs and embryos could yield important new insights into basic human biology and development, and help prevent and treat many inherited diseases, including \u003ca href=\"http://ghr.nlm.nih.gov/condition/huntington-disease\">Huntington's disease\u003c/a>, cystic fibrosis and \u003ca href=\"http://ghr.nlm.nih.gov/condition/tay-sachs-disease\">Tay-Sachs disease\u003c/a>.\u003c/p>\n\u003cp>\"But altering the so-called \u003ca href=\"http://ghr.nlm.nih.gov/glossary=germline\">germline\u003c/a> in this manner has long been considered off-limits. That's because such changes can be passed down to future generations. Mistakes could inadvertently introduce new diseases into the human gene pool.\"\u003c/p>\u003c/blockquote>\n\u003cp>And at the extreme end, Rob says \"another fear is that taking this step would open the door to designer babies\" — kids modified to be especially smart or attractive, for example.\u003c/p>\n\u003cp>Supporters of Monday's decision in the U.K. argue that it is \"balancing the benefits to research and ethical considerations,\" the \u003cem>Guardian\u003c/em> reports.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Sarah Norcross, director of Progress Educational Trust, told the newspaper that it represents \"a victory for level-headed regulation over moral panic.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=U.K.+Regulator+Gives+Go-Ahead+For+Scientists+To+Edit+Genes+In+Human+Embryos&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\" alt=\"\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Can Extreme Exercise Hurt Your Heart? Swim the Pacific to Find Out",
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"content": "\u003cp>Any day now, Ben Lecomte will plunge into the Pacific Ocean off a Tokyo beach toward San Francisco. He wants to become the first person to swim across the Pacific. He's already the first person to free swim across the Atlantic Ocean, without a kickboard.\u003c/p>\n\u003cp>No one knows how the physical feat of swimming 5,500 miles will affect Lecomte's heart, but cardiologists are anxious to find out. His swim offers a rare opportunity to study whether extreme athletic performance has a harmful effect on the heart.\u003c/p>\n\u003cp>[contextly_sidebar id=\"JuYUmV8doE13AUPgKViOiltqAlgnStNq\"]After he completed the swim across the Atlantic in 1998, the first words out of Ben Lecomte's mouth were \"never again.\"\u003c/p>\n\u003cp>Now this 48-year-old, French-born American is about to embark on a swim expected to take five to six months.\u003c/p>\n\u003cp>\"I'm not a fast swimmer,\" Lecomte says. But boy is he dedicated. \"Swimming is a passion,\" he says. \"You cannot just push it away.\"\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Lecomte, who lives in Austin, Texas, is diving back into the ocean to focus attention on environmental problems. He's worried about the future for his kids. During the swim, he will collect data on the Pacific, including the microbes and trash he encounters. People can follow along on his Facebook page, \u003ca href=\"https://www.facebook.com/TheLongestSwim\" target=\"_blank\">The Longest Swim\u003c/a>.\u003c/p>\n\u003cp>He will also collect data on himself, including how his heart holds up for eight hours of freestyle every single day. This data will go to \u003ca href=\"http://profiles.utsouthwestern.edu/profile/14262/benjamin-levine.html\" target=\"_blank\">Benjamin Levine, \u003c/a>a cardiologist at UT Southwestern Medical Center and director of the \u003ca href=\"http://www.ieemphd.org/\" target=\"_blank\">Institute of Exercise and Environmental Medicine\u003c/a> at Texas Health Resources.\u003c/p>\n\u003cp>\u003cimg class=\"aligncenter size-full wp-image-106548\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/02/pacific-swim.png\" alt=\"pacific-swim\" width=\"600\" height=\"450\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/02/pacific-swim.png 600w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/pacific-swim-400x300.png 400w\" sizes=\"(max-width: 600px) 100vw, 600px\">\u003c/p>\n\u003cp>\"My question has always been, how much exercise do you need to do to injure the heart?\" Levine says. \"Since Ben was planning to swim across the Pacific Ocean, we thought, hey, this might be a good opportunity.\"\u003c/p>\n\u003cp>After all, we're told more exercise is better — and generally, it is. Yet several \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538475/\">studies\u003c/a> of extreme endurance athletes have called that idea into \u003ca href=\"http://circ.ahajournals.org/content/130/12/987.extract\">question.\u003c/a>\u003c/p>\n\u003cp>People who run marathons or do triathlons can have some scarring or fibrosis in the center of the heart, says \u003ca href=\"http://www.harthosp.org/findaphysician/default.aspx?view=detail&phyid=003j000000gd69maat\">Paul Thompson\u003c/a>, chief of cardiology at Hartford Hospital in Connecticut. \"Right where the two sides of the heart join each other — the septum.\"\u003c/p>\n\u003cp>This scarring at the septum is worrisome, Thompson says, particularly for people who have an underlying genetic condition that weakens the heart muscle.\u003c/p>\n\u003cfigure id=\"attachment_106550\" class=\"wp-caption alignleft\" style=\"max-width: 300px\">\u003cimg class=\"size-full wp-image-106550\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/02/swimmer.jpg\" alt=\"Lecomte will gather data on the environment and on his own health during the Pacific swim. \" width=\"300\" height=\"365\">\u003cfigcaption class=\"wp-caption-text\">Lecomte will gather data on the environment and on his own health during the Pacific swim. \u003ccite>(Bongani Mlambo/The Longest Swim)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>And there's a second area of concern. \"It's been shown in a couple of \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538475/\">studies\u003c/a> now that people who are lifelong endurance athletes have more coronary artery calcification than you would expect for their risk factors,\" Thompson says.\u003c/p>\n\u003cp>Calcification, meaning a \u003ca href=\"http://www.nhlbi.nih.gov/health/health-topics/topics/cscan/\">buildup of calcium\u003c/a> in the heart, is not something you'd expect to find in people swimming long distances, running ultramarathons or tackling Ironman competitions. There could be a genetic explanation to both the calcium issue and the scarring, Thompson says. So he advises people to study up on their family history and see if there have been cases of \u003ca href=\"http://www.nih.gov/news-events/news-releases/nih-cdc-launch-registry-sudden-death-young\">sudden death\u003c/a>, then weigh the benefits and risks of extreme exercise.\u003c/p>\n\u003cp>\"We don't think that long-term exercise is dangerous, because long-term endurance athletes live longer than other people,\" Thompson says. But Thompson does want to figure out what's going on.\u003c/p>\n\u003cp>Which brings us back to Ben Lecomte and the tricky task of monitoring his heart from the middle of the ocean.\u003c/p>\n\u003cp>Using technology that\u003ca href=\"http://science.nasa.gov/science-news/science-at-nasa/2009/10jul_cardio/\"> NASA\u003c/a> uses for monitoring astronauts on the International Space Station, UT Southwestern's Levine will be able to monitor Lecomte's heart during his swim. It's a small echo machine, like an ultrasound for the heart, that will be on the support boat traveling with Lecomte. Once a month, while resting on the boat, Lecomte will turn the machine on and use a satellite phone to call the Johnson Space Center.\u003c/p>\n\u003cfigure id=\"attachment_106553\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-106553\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/02/longest-swim-800x544.jpg\" alt=\"Dr. Benjamin Levine performs an echocardiogram on Ben Lecomte to record a baseline of his heart function at the Institute for Exercise and Environmental Medicine in Dallas. \" width=\"800\" height=\"544\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/02/longest-swim.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/longest-swim-400x272.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/longest-swim-768x522.jpg 768w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Dr. Benjamin Levine performs an echocardiogram on Ben Lecomte to record a baseline of his heart function at the Institute for Exercise and Environmental Medicine in Dallas. \u003ccite>(The Longest Swim)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Someone there will tell Lecomte how to position the probe to give himself an echocardiogram.\u003c/p>\n\u003cp>From his desk in Dallas, Levine will see images of how fast Lecomte's heart is contracting, how quickly the blood flows in and out of the valves, and any stress where the two sides of the heart meet.\u003c/p>\n\u003cp>His prediction?\u003c/p>\n\u003cp>\"I think when he comes back he'll have signs of a little inflammation or irritation right where the right and left ventricle connect,\" Levine says. \"That's what we see in some other of these elite long-endurance athletes, and I think that's what we'll see in Ben.\"\u003c/p>\n\u003cp>For most people this inflammation is really of no consequence, Levine says. But for some people — for example, those who have pulmonary hypertension or other kinds of heart disease — it could cause problems.\u003c/p>\n\u003cp>He hopes studying Lecomte's heart will help reveal why extreme exercise changes the heart and determine whether there's a limit to how much exercise the human heart can handle.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Ben Lecomte is not worried. He thinks his heart can handle the enormous ocean, some 20-foot-high waves and the occasional shark.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 KERA Unlimited. To see more, visit \u003ca href=\"http://www.kera.org/\">KERA Unlimited\u003c/a>.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Can+Extreme+Exercise+Hurt+Your+Heart%3F+Swim+The+Pacific+To+Find+Out&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\" alt=\"\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Any day now, Ben Lecomte will plunge into the Pacific Ocean off a Tokyo beach toward San Francisco. He wants to become the first person to swim across the Pacific. He's already the first person to free swim across the Atlantic Ocean, without a kickboard.\u003c/p>\n\u003cp>No one knows how the physical feat of swimming 5,500 miles will affect Lecomte's heart, but cardiologists are anxious to find out. His swim offers a rare opportunity to study whether extreme athletic performance has a harmful effect on the heart.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>After he completed the swim across the Atlantic in 1998, the first words out of Ben Lecomte's mouth were \"never again.\"\u003c/p>\n\u003cp>Now this 48-year-old, French-born American is about to embark on a swim expected to take five to six months.\u003c/p>\n\u003cp>\"I'm not a fast swimmer,\" Lecomte says. But boy is he dedicated. \"Swimming is a passion,\" he says. \"You cannot just push it away.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Lecomte, who lives in Austin, Texas, is diving back into the ocean to focus attention on environmental problems. He's worried about the future for his kids. During the swim, he will collect data on the Pacific, including the microbes and trash he encounters. People can follow along on his Facebook page, \u003ca href=\"https://www.facebook.com/TheLongestSwim\" target=\"_blank\">The Longest Swim\u003c/a>.\u003c/p>\n\u003cp>He will also collect data on himself, including how his heart holds up for eight hours of freestyle every single day. This data will go to \u003ca href=\"http://profiles.utsouthwestern.edu/profile/14262/benjamin-levine.html\" target=\"_blank\">Benjamin Levine, \u003c/a>a cardiologist at UT Southwestern Medical Center and director of the \u003ca href=\"http://www.ieemphd.org/\" target=\"_blank\">Institute of Exercise and Environmental Medicine\u003c/a> at Texas Health Resources.\u003c/p>\n\u003cp>\u003cimg class=\"aligncenter size-full wp-image-106548\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/02/pacific-swim.png\" alt=\"pacific-swim\" width=\"600\" height=\"450\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/02/pacific-swim.png 600w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/pacific-swim-400x300.png 400w\" sizes=\"(max-width: 600px) 100vw, 600px\">\u003c/p>\n\u003cp>\"My question has always been, how much exercise do you need to do to injure the heart?\" Levine says. \"Since Ben was planning to swim across the Pacific Ocean, we thought, hey, this might be a good opportunity.\"\u003c/p>\n\u003cp>After all, we're told more exercise is better — and generally, it is. Yet several \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538475/\">studies\u003c/a> of extreme endurance athletes have called that idea into \u003ca href=\"http://circ.ahajournals.org/content/130/12/987.extract\">question.\u003c/a>\u003c/p>\n\u003cp>People who run marathons or do triathlons can have some scarring or fibrosis in the center of the heart, says \u003ca href=\"http://www.harthosp.org/findaphysician/default.aspx?view=detail&phyid=003j000000gd69maat\">Paul Thompson\u003c/a>, chief of cardiology at Hartford Hospital in Connecticut. \"Right where the two sides of the heart join each other — the septum.\"\u003c/p>\n\u003cp>This scarring at the septum is worrisome, Thompson says, particularly for people who have an underlying genetic condition that weakens the heart muscle.\u003c/p>\n\u003cfigure id=\"attachment_106550\" class=\"wp-caption alignleft\" style=\"max-width: 300px\">\u003cimg class=\"size-full wp-image-106550\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/02/swimmer.jpg\" alt=\"Lecomte will gather data on the environment and on his own health during the Pacific swim. \" width=\"300\" height=\"365\">\u003cfigcaption class=\"wp-caption-text\">Lecomte will gather data on the environment and on his own health during the Pacific swim. \u003ccite>(Bongani Mlambo/The Longest Swim)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>And there's a second area of concern. \"It's been shown in a couple of \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538475/\">studies\u003c/a> now that people who are lifelong endurance athletes have more coronary artery calcification than you would expect for their risk factors,\" Thompson says.\u003c/p>\n\u003cp>Calcification, meaning a \u003ca href=\"http://www.nhlbi.nih.gov/health/health-topics/topics/cscan/\">buildup of calcium\u003c/a> in the heart, is not something you'd expect to find in people swimming long distances, running ultramarathons or tackling Ironman competitions. There could be a genetic explanation to both the calcium issue and the scarring, Thompson says. So he advises people to study up on their family history and see if there have been cases of \u003ca href=\"http://www.nih.gov/news-events/news-releases/nih-cdc-launch-registry-sudden-death-young\">sudden death\u003c/a>, then weigh the benefits and risks of extreme exercise.\u003c/p>\n\u003cp>\"We don't think that long-term exercise is dangerous, because long-term endurance athletes live longer than other people,\" Thompson says. But Thompson does want to figure out what's going on.\u003c/p>\n\u003cp>Which brings us back to Ben Lecomte and the tricky task of monitoring his heart from the middle of the ocean.\u003c/p>\n\u003cp>Using technology that\u003ca href=\"http://science.nasa.gov/science-news/science-at-nasa/2009/10jul_cardio/\"> NASA\u003c/a> uses for monitoring astronauts on the International Space Station, UT Southwestern's Levine will be able to monitor Lecomte's heart during his swim. It's a small echo machine, like an ultrasound for the heart, that will be on the support boat traveling with Lecomte. Once a month, while resting on the boat, Lecomte will turn the machine on and use a satellite phone to call the Johnson Space Center.\u003c/p>\n\u003cfigure id=\"attachment_106553\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-106553\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/02/longest-swim-800x544.jpg\" alt=\"Dr. Benjamin Levine performs an echocardiogram on Ben Lecomte to record a baseline of his heart function at the Institute for Exercise and Environmental Medicine in Dallas. \" width=\"800\" height=\"544\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/02/longest-swim.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/longest-swim-400x272.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/longest-swim-768x522.jpg 768w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Dr. Benjamin Levine performs an echocardiogram on Ben Lecomte to record a baseline of his heart function at the Institute for Exercise and Environmental Medicine in Dallas. \u003ccite>(The Longest Swim)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Someone there will tell Lecomte how to position the probe to give himself an echocardiogram.\u003c/p>\n\u003cp>From his desk in Dallas, Levine will see images of how fast Lecomte's heart is contracting, how quickly the blood flows in and out of the valves, and any stress where the two sides of the heart meet.\u003c/p>\n\u003cp>His prediction?\u003c/p>\n\u003cp>\"I think when he comes back he'll have signs of a little inflammation or irritation right where the right and left ventricle connect,\" Levine says. \"That's what we see in some other of these elite long-endurance athletes, and I think that's what we'll see in Ben.\"\u003c/p>\n\u003cp>For most people this inflammation is really of no consequence, Levine says. But for some people — for example, those who have pulmonary hypertension or other kinds of heart disease — it could cause problems.\u003c/p>\n\u003cp>He hopes studying Lecomte's heart will help reveal why extreme exercise changes the heart and determine whether there's a limit to how much exercise the human heart can handle.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Ben Lecomte is not worried. He thinks his heart can handle the enormous ocean, some 20-foot-high waves and the occasional shark.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 KERA Unlimited. To see more, visit \u003ca href=\"http://www.kera.org/\">KERA Unlimited\u003c/a>.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Can+Extreme+Exercise+Hurt+Your+Heart%3F+Swim+The+Pacific+To+Find+Out&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\" alt=\"\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>The bad news came on Kirsten McGowan's birthday. She was pregnant with her first child Patrick, and discovered she was a carrier for cystic fibrosis.\u003c/p>\n\u003cp>A child can only inherit the disease if both parents are carriers, and McGowan's husband also tested positive.\u003c/p>\n\u003cp>\"It hit us out of the blue,\" McGowan says.\u003c/p>\n\u003cp>The genetic disease causes mucus to build up in the lungs and digestive system. Digestive enzymes are blocked, which inhibits the absorption of food nutrients. It's a chronic illness that can't be cured, but can be treated.\u003c/p>\n\u003cp>When Patrick was born with the illness, doctors put him on a diet high in protein, fat and salt so he'd maintain a healthy weight. And they outlined a daily breathing regime of two to three hours to prevent mucus build-up in his lungs.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cimg class=\"alignright wp-image-104549\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/01/cystic-fibrosis-image.jpg\" alt=\"cystic fibrosis image\" width=\"336\" height=\"240\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/01/cystic-fibrosis-image.jpg 493w, https://ww2.kqed.org/app/uploads/sites/13/2016/01/cystic-fibrosis-image-400x286.jpg 400w\" sizes=\"(max-width: 336px) 100vw, 336px\">Mucus builds up because CF makes it more thick and viscous.\u003c/p>\n\u003cp>The CF gene controls the movement of chloride ions in and out of cells, which regulates the salt and water balances in the lungs and pancreas. Mutations in this gene rob mucus of water and it builds up in the lungs it can inhibit breathing.\u003c/p>\n\u003cp>McGowan says detecting the illness early in Patrick meant he could get treatment right away.\u003c/p>\n\u003cp>\"Getting a diagnosis early is key,\" says McGowan. \"Knowing sooner helps you process that emotion--to be angry, to be sad--and then say, 'OK, now h\u003cspan style=\"font-weight: 400\">ow do I help my son or daughter stay healthy.\"\u003c/span>\u003c/p>\n\u003cp>CF is the most common fatal genetic disease in the United States. It takes just two CF gene mutation to cause cystic fibrosis and more than 2,000 changes are known.\u003c/p>\n\u003cp>\u003cstrong>A Rapid and Affordable New Test\u003c/strong>\u003c/p>\n\u003cp>Forty different genetic mutations account for most types of cystic fibrosis in California. The state tests for these common mutations but there are more than 2,000 possible changes, and more are discovered each year.\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">\"Current tests are not comprehensive,\" says Stanford geneticist Curt Scharfe. \u003c/span>\"They can miss newborns with two rare mutations.\"\u003c/p>\n\u003cp>Scharfe compares the CF gene mutations to typos in a novel. But imagine a really big novel, like \"War and Peace,\" with really unusual typos.\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">\"Imagine changes in a letter in a word somewhere in a book,\" says Scharfe. \"It doesn't help if you read one page very well, you need to read all these pages--or genetic changes--well. We're talking about rare typos and they happen once, not many times.\"\u003c/span>\u003c/p>\n\u003cp>Currently, the state has a tiered testing method for CF; it\u003cstrong> \u003c/strong>tests once for common mutations and send all positive results to Stanford for further testing. Stanford does about 9,000 tests a year.\u003c/p>\n\u003cp>Now, researchers at Stanford have figured out how to do \u003ca href=\"http://jmd.amjpathol.org/article/S1525-1578(15)00275-5/abstract\" target=\"_blank\">one test for CF \u003c/a>using genome sequencing. The scientists were able to sequence the entire CF gene which means they can spot any and all abnormalities.\u003c/p>\n\u003cfigure id=\"attachment_104686\" class=\"wp-caption alignright\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-104686\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/01/Dried-blood-testing-800x443.jpg\" alt=\"Stanford researchers were able to take enough DNA from dried blood spots to test newborns for cystic fibrosis.\" width=\"800\" height=\"443\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/01/Dried-blood-testing-800x443.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/01/Dried-blood-testing-400x221.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/01/Dried-blood-testing-768x425.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/01/Dried-blood-testing-960x532.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/01/Dried-blood-testing-672x372.jpg 672w, https://ww2.kqed.org/app/uploads/sites/13/2016/01/Dried-blood-testing.jpg 1024w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Stanford researchers were able to take enough DNA from dried blood to sequence the CF gene for cystic fibrosis. \u003ccite>(Eric T. Sheler/US Air Force)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>At birth, all infants get a heel pin-prick to test their blood for a range of diseases. Stanford researchers used blood from the test to map\u003cstrong> \u003c/strong>the CF gene. Now when they test babies, the results show whether or not a baby has a mutation on that gene.\u003c/p>\n\u003cp>The other benefit of Stanford's new test is that researchers can sequence DNA from nearly 100 babies at once in an \u003ca href=\"http://www.illumina.com/systems/miseq.html\">Illumina genome sequencing machine\u003c/a>.\u003c/p>\n\u003cp>This process takes only a few days and Scharfe hopes eventually it will only take a few hours. Current tests take longer than a week.\u003c/p>\n\u003cp>And because the process sequences the entire CF genome it won't miss mutations, even if they are extremely rare.\u003c/p>\n\u003cp>\u003cstrong>The Future for Stanford's CF Test\u003c/strong>\u003c/p>\n\u003cp>Stanford's new test is about one-fifth the cost of current CF tests. That's partially because genome sequencing has become much less expensive. Analyzing the CF gene is possible in a way that it wasn't fifty years ago.\u003c/p>\n\u003cfigure id=\"attachment_105112\" class=\"wp-caption alignright\" style=\"max-width: 338px\">\u003cimg class=\"size-medium wp-image-105112\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/01/IMG_7115-338x600.png\" alt=\"At age six, Patrick McGowan is extremely active and shows few outward signs of cystic fibrosis.\" width=\"338\" height=\"600\">\u003cfigcaption class=\"wp-caption-text\">At age six, Patrick McGowan is extremely active and shows few outward signs of cystic fibrosis. \u003ccite>(Kirsten McGowan)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>So Scharfe hopes that, eventually, the test will be used throughout the country.\u003c/p>\n\u003cp>\"California has the most comprehensive cystic fibrosis testing program and it would be very beneficial to have this new test available in many states.\"\u003c/p>\n\u003cp>Before California's statewide newborn screening program started in 1966, many kids with genetic disorders would go undiagnosed and symptoms would show up later.\u003cstrong>\u003cbr>\n\u003c/strong>\u003cbr>\nBut this hasn't been a problem for Kirsten's son Patrick.\u003c/p>\n\u003cp>\"Outwardly he looks like any other kid walking down the sidewalk,\" says McGowan.\u003c/p>\n\u003cp>She said early detection of genetic diseases is crucial.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"The sooner you get that news, the sooner you stop thinking ‘what if’. And then can get to that good place of living with the disease.\"\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>The bad news came on Kirsten McGowan's birthday. She was pregnant with her first child Patrick, and discovered she was a carrier for cystic fibrosis.\u003c/p>\n\u003cp>A child can only inherit the disease if both parents are carriers, and McGowan's husband also tested positive.\u003c/p>\n\u003cp>\"It hit us out of the blue,\" McGowan says.\u003c/p>\n\u003cp>The genetic disease causes mucus to build up in the lungs and digestive system. Digestive enzymes are blocked, which inhibits the absorption of food nutrients. It's a chronic illness that can't be cured, but can be treated.\u003c/p>\n\u003cp>When Patrick was born with the illness, doctors put him on a diet high in protein, fat and salt so he'd maintain a healthy weight. And they outlined a daily breathing regime of two to three hours to prevent mucus build-up in his lungs.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cimg class=\"alignright wp-image-104549\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/01/cystic-fibrosis-image.jpg\" alt=\"cystic fibrosis image\" width=\"336\" height=\"240\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/01/cystic-fibrosis-image.jpg 493w, https://ww2.kqed.org/app/uploads/sites/13/2016/01/cystic-fibrosis-image-400x286.jpg 400w\" sizes=\"(max-width: 336px) 100vw, 336px\">Mucus builds up because CF makes it more thick and viscous.\u003c/p>\n\u003cp>The CF gene controls the movement of chloride ions in and out of cells, which regulates the salt and water balances in the lungs and pancreas. Mutations in this gene rob mucus of water and it builds up in the lungs it can inhibit breathing.\u003c/p>\n\u003cp>McGowan says detecting the illness early in Patrick meant he could get treatment right away.\u003c/p>\n\u003cp>\"Getting a diagnosis early is key,\" says McGowan. \"Knowing sooner helps you process that emotion--to be angry, to be sad--and then say, 'OK, now h\u003cspan style=\"font-weight: 400\">ow do I help my son or daughter stay healthy.\"\u003c/span>\u003c/p>\n\u003cp>CF is the most common fatal genetic disease in the United States. It takes just two CF gene mutation to cause cystic fibrosis and more than 2,000 changes are known.\u003c/p>\n\u003cp>\u003cstrong>A Rapid and Affordable New Test\u003c/strong>\u003c/p>\n\u003cp>Forty different genetic mutations account for most types of cystic fibrosis in California. The state tests for these common mutations but there are more than 2,000 possible changes, and more are discovered each year.\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">\"Current tests are not comprehensive,\" says Stanford geneticist Curt Scharfe. \u003c/span>\"They can miss newborns with two rare mutations.\"\u003c/p>\n\u003cp>Scharfe compares the CF gene mutations to typos in a novel. But imagine a really big novel, like \"War and Peace,\" with really unusual typos.\u003c/p>\n\u003cp>\u003cspan style=\"font-weight: 400\">\"Imagine changes in a letter in a word somewhere in a book,\" says Scharfe. \"It doesn't help if you read one page very well, you need to read all these pages--or genetic changes--well. We're talking about rare typos and they happen once, not many times.\"\u003c/span>\u003c/p>\n\u003cp>Currently, the state has a tiered testing method for CF; it\u003cstrong> \u003c/strong>tests once for common mutations and send all positive results to Stanford for further testing. Stanford does about 9,000 tests a year.\u003c/p>\n\u003cp>Now, researchers at Stanford have figured out how to do \u003ca href=\"http://jmd.amjpathol.org/article/S1525-1578(15)00275-5/abstract\" target=\"_blank\">one test for CF \u003c/a>using genome sequencing. The scientists were able to sequence the entire CF gene which means they can spot any and all abnormalities.\u003c/p>\n\u003cfigure id=\"attachment_104686\" class=\"wp-caption alignright\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-104686\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/01/Dried-blood-testing-800x443.jpg\" alt=\"Stanford researchers were able to take enough DNA from dried blood spots to test newborns for cystic fibrosis.\" width=\"800\" height=\"443\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/01/Dried-blood-testing-800x443.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/01/Dried-blood-testing-400x221.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/01/Dried-blood-testing-768x425.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/01/Dried-blood-testing-960x532.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/01/Dried-blood-testing-672x372.jpg 672w, https://ww2.kqed.org/app/uploads/sites/13/2016/01/Dried-blood-testing.jpg 1024w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Stanford researchers were able to take enough DNA from dried blood to sequence the CF gene for cystic fibrosis. \u003ccite>(Eric T. Sheler/US Air Force)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>At birth, all infants get a heel pin-prick to test their blood for a range of diseases. Stanford researchers used blood from the test to map\u003cstrong> \u003c/strong>the CF gene. Now when they test babies, the results show whether or not a baby has a mutation on that gene.\u003c/p>\n\u003cp>The other benefit of Stanford's new test is that researchers can sequence DNA from nearly 100 babies at once in an \u003ca href=\"http://www.illumina.com/systems/miseq.html\">Illumina genome sequencing machine\u003c/a>.\u003c/p>\n\u003cp>This process takes only a few days and Scharfe hopes eventually it will only take a few hours. Current tests take longer than a week.\u003c/p>\n\u003cp>And because the process sequences the entire CF genome it won't miss mutations, even if they are extremely rare.\u003c/p>\n\u003cp>\u003cstrong>The Future for Stanford's CF Test\u003c/strong>\u003c/p>\n\u003cp>Stanford's new test is about one-fifth the cost of current CF tests. That's partially because genome sequencing has become much less expensive. Analyzing the CF gene is possible in a way that it wasn't fifty years ago.\u003c/p>\n\u003cfigure id=\"attachment_105112\" class=\"wp-caption alignright\" style=\"max-width: 338px\">\u003cimg class=\"size-medium wp-image-105112\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/01/IMG_7115-338x600.png\" alt=\"At age six, Patrick McGowan is extremely active and shows few outward signs of cystic fibrosis.\" width=\"338\" height=\"600\">\u003cfigcaption class=\"wp-caption-text\">At age six, Patrick McGowan is extremely active and shows few outward signs of cystic fibrosis. \u003ccite>(Kirsten McGowan)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>So Scharfe hopes that, eventually, the test will be used throughout the country.\u003c/p>\n\u003cp>\"California has the most comprehensive cystic fibrosis testing program and it would be very beneficial to have this new test available in many states.\"\u003c/p>\n\u003cp>Before California's statewide newborn screening program started in 1966, many kids with genetic disorders would go undiagnosed and symptoms would show up later.\u003cstrong>\u003cbr>\n\u003c/strong>\u003cbr>\nBut this hasn't been a problem for Kirsten's son Patrick.\u003c/p>\n\u003cp>\"Outwardly he looks like any other kid walking down the sidewalk,\" says McGowan.\u003c/p>\n\u003cp>She said early detection of genetic diseases is crucial.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"The sooner you get that news, the sooner you stop thinking ‘what if’. And then can get to that good place of living with the disease.\"\u003c/p>\n\n\u003c/div>\u003c/p>",
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"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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"soldout": {
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"title": "SOLD OUT: Rethinking Housing in America",
"tagline": "A new future for housing",
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"cuisine": {
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"restaurantDataById": {},
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}
