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"content": "\u003cp>\u003cem>This story was originally published June 1, 2017.\u003c/em>\u003c/p>\n\u003cp>Melissa Allen and her boyfriend, Joseph Hart, were back from playing “\u003ca href=\"https://breakoutgames.com/\" target=\"_blank\" rel=\"noopener noreferrer\">Breakout\u003c/a>, ” a game that required them to be handcuffed to a bench in a locked room. Provided with clues hidden in locked boxes and drawers, they were then given an hour to escape.\u003c/p>\n\u003caside class=\"pullquote alignright\">Researchers have found positive romantic effects when couples take on exciting and challenging activities as a team.\u003c/aside>\n\u003cp>But they were running out of time, stuck on a message about looking at things through a different lens. Melissa says: “Then it suddenly dawned on us!\"\u003c/p>\n\u003cp>They had to look through a camera to read a secret message, hidden in the text of a newspaper. That gave them the key to solving the final riddle, and the answer contained the combination to the door lock.\u003c/p>\n\u003cp>Out they went, with seven seconds to spare.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“It was really great,” says Melissa. “I felt like we were working together as a team.”\u003c/p>\n\u003cp>Melissa and Joseph, who live in Asheville, North Carolina, didn’t play the game just because it sounded fun. Melissa had told me they'd been feeling disconnected for months. Having read up on the topic of attraction and relationship satisfaction after my own failed relationship, I suggested they do something exciting together. While that may seem like somewhat pedestrian advice, it's also what the research suggests for rekindling a romantic flame that had nearly burned itself out.\u003c/p>\n\u003cp>\u003cstrong>‘I Knew I Wanted to Date Her’\u003c/strong>\u003c/p>\n\u003cp>The arc of Melissa and Joseph's relationship may seem familiar. The two had met five years ago. Joseph, without the benefit of even a conversation between them, was immediately smitten.\u003c/p>\n\u003caside class=\"pullquote alignright\">Results from one study showed couples who completed an exciting activity together reported increased feelings of passionate love and relationship satisfaction, whereas those who performed a mundane task showed no increase.\u003c/aside>\n\u003cp>“I thought she was beautiful,” he says. “Like almost too perfect to be human. I knew I wanted to date her.”\u003c/p>\n\u003cp>Melissa was slower to warm up to the idea. She was already seeing someone, and Joseph had been nowhere on her romantic radar. But when he discovered Melissa's relationship had ended, he seized the opportunity and asked her out.\u003c/p>\n\u003cp>Eight months later, they were living together.\u003c/p>\n\u003cp>They’ve now been together for a year-and-a-half. But that initial attraction has started to fade.\u003c/p>\n\u003cp>“We probably don’t spend as much time together as we used to,” Melissa says.\u003c/p>\n\u003cp>Whether that’s the cause or the effect of feeling less connected, she can't say.\u003c/p>\n\u003cp>\u003cstrong>Physical Excitation and Romantic Interest\u003c/strong>\u003c/p>\n\u003cp>Melissa's earliest memory of Joseph is from the day she decided to run a half-marathon on the gym treadmill and saw him working as a trainer.\u003c/p>\n\u003cp>While most people know that initial romantic interest is \u003ca href=\"http://onlinelibrary.wiley.com/doi/10.1111/j.1467-6494.2009.00570.x/full\" target=\"_blank\" rel=\"noopener noreferrer\">highly influenced by physical appearance\u003c/a>, what is less well-known is that attraction is also influenced by our own bodily state. When we are physically aroused — not sexually, but through stress, excitement, or exercise — we may find others more romantically appealing than we would under calmer circumstances.\u003c/p>\n\u003cfigure id=\"attachment_401557\" class=\"wp-caption alignright\" style=\"max-width: 465px\">\u003ca href=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/06/MelissaJosephMarathon3.jpg\">\u003cimg class=\"wp-image-401557 size-full\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/06/MelissaJosephMarathon3.jpg\" alt=\"\" width=\"465\" height=\"620\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/06/MelissaJosephMarathon3.jpg 465w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/MelissaJosephMarathon3-160x213.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/MelissaJosephMarathon3-240x320.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/MelissaJosephMarathon3-375x500.jpg 375w\" sizes=\"(max-width: 465px) 100vw, 465px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Joseph and Melissa at a marathon. (Courtesy Joseph Hart and Melissa Allen)\u003c/figcaption>\u003c/figure>\n\u003cp>The first \u003ca href=\"http://psycnet.apa.org/psycinfo/1975-03016-001\" target=\"_blank\" rel=\"noopener noreferrer\">study\u003c/a> demonstrating the effect of physical arousal on attraction was published in 1974. Social psychologists Arthur Aron and Donald Dutton sent a women to stand in the middle of the \u003ca href=\"https://www.capbridge.com/\" target=\"_blank\" rel=\"noopener noreferrer\">Capilano suspension bridge\u003c/a>, near Vancouver. The bridge, long and narrow, spans a 230-foot-deep canyon and sways when people cross it.\u003c/p>\n\u003cp>“You walk over it and you’re a little scared,” Aron says.\u003c/p>\n\u003cp>In the study, the researchers had a woman stop men in the middle of the bridge to fill out a survey. After they did, the woman gave each man her name and phone number.\u003c/p>\n\u003cp>Then Aron and Dutton sent the same woman to stand in the middle of a shorter, sturdier bridge in the same park and repeat the process.\u003c/p>\n\u003cp>The results? The men who met the woman in the middle of the swaying suspension bridge were four times more likely to call her up afterward than those who met her on the sturdy bridge. The researchers concluded that the higher rate was evidence the men from the suspension bridge were more attracted to the interviewer.\u003c/p>\n\u003cp>“The idea is that you are physiologically stirred up when you meet this person,” Aron says. “And because you associate the feeling of arousal with that person, you think, “Oh, I’m attracted to her… that's why I’m stirred up.’ ”\u003c/p>\n\u003cp>Aron says the phenomenon — which he calls misattribution of arousal — has been replicated in other contexts, in both men and women. In one study the effect was induced by \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/14574097\" target=\"_blank\" rel=\"noopener noreferrer\">having participants run on a treadmill\u003c/a> to increase their heart rate; another \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/14574097\" target=\"_blank\" rel=\"noopener noreferrer\">study\u003c/a> documented greater physical attraction in nonromantic theme-park visitors exiting a roller coaster. Arousal-attraction effects have been found in animals, as well. Male prairie voles, known for lifelong mating, were found to be \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC38169/\" target=\"_blank\" rel=\"noopener noreferrer\">more likely\u003c/a> to pair bond with the first female they encountered if they were first put into a tub of water and forced to swim.\u003c/p>\n\u003cp>While physical excitement can stir initial romantic interest, other types of activities can help couples add a jolt happiness to their existing relationship.\u003c/p>\n\u003cp>\u003cstrong>How to Add the Happy\u003c/strong>\u003c/p>\n\u003cp>In the early ‘90s, Aron and his colleagues conducted a \u003ca href=\"http://journals.sagepub.com/doi/abs/10.1177/026540759301000205\" target=\"_blank\" rel=\"noopener noreferrer\">study\u003c/a> with 53 married couples. They had the pairs rate activities like skiing, hiking, and attending a play as either “exciting” or “pleasant.” The researchers then assigned each couple, over a 10-week period, to engage in only the exciting or only the pleasant activities for 1.5 hours each week.\u003c/p>\n\u003cp>At the end of the 10 weeks, questionnaires filled out by the couples who did the exciting activities showed a small but statistically significant increase in their level of marital satisfaction. Those who did the pleasant activities actually showed slight decreases. (It’s perhaps telling that activities couples commonly participate in together, such as visiting friends, watching a movie, and eating out, tended to be placed in the “pleasant” bucket.)\u003c/p>\n\u003cp>Aron and his colleagues replicated the effect in a more rigorous \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/10707334\" target=\"_blank\" rel=\"noopener noreferrer\">experiment\u003c/a> in the lab. Couples came into the laboratory and completed a seven-minute activity together. Half of the couples went through an obstacle course on their hands and knees, velcroed to each other at the wrists and feet and having to carry an object without using their hands. The other half of the couples completed a mundane ball-rolling task.\u003c/p>\n\u003cfigure id=\"attachment_401493\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/06/NovelActivitiesTaskCrop.jpg\">\u003cimg class=\"size-large wp-image-401493\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-1020x679.jpg\" alt=\"\" width=\"640\" height=\"426\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-1020x679.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-768x511.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-960x639.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-520x346.jpg 520w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop.jpg 1152w\" sizes=\"(max-width: 640px) 100vw, 640px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Researcher and partner test out a challenging obstacle course for a study on relationship satisfaction. (Courtesy Arthur Aron)\u003c/figcaption>\u003c/figure>\n\u003cp>Results from the study showed the couples who completed the exciting activity reported increased feelings of passionate love and relationship satisfaction immediately afterward, whereas those who performed the mundane task showed no increase. The couples who completed the exciting activity also used more positive language with one another.\u003c/p>\n\u003cp>While the researchers did not measure whether those immediate positive effects lasted, Harry Reis, a social psychologist at the University of Rochester who studies romantic relationships, says taking on exciting activities could have “long-term carryover benefits.” In fact, a 2013 \u003ca href=\"http://psycnet.apa.org/journals/cfp/2/1/34/\" target=\"_blank\" rel=\"noopener noreferrer\">study\u003c/a> found that after a four-week intervention, couples who jointly took part in regular exciting activities not only reported higher relationship satisfaction afterward, but also maintained some of that added happiness four months later.\u003c/p>\n\u003caside class=\"pullquote alignright\">'There’s definitely a difference in how it makes you feel about your partner ... knowing that he wasn’t great at it and I wasn’t great at it, but that we both were trying it together.'\u003c/aside>\n\u003cp>Both Aron and Reis are quick to point out that the long-term benefits of undertaking exciting activities are not due to physical excitation. Physical excitement has short-term effects on our physical attraction. But the longer-term relationship benefits observed in these studies come from the novelty and challenge that the activities provide, the researchers said.\u003c/p>\n\u003cp>The activity doesn’t have to be physically arousing at all to see the effects on overall relationship satisfaction, Reis says. “You could get the same effects from doing something cognitively challenging.”\u003c/p>\n\u003cp>A 2014 \u003ca href=\"http://onlinelibrary.wiley.com/doi/10.1111/pere.12062/abstract\" target=\"_blank\" rel=\"noopener noreferrer\">study\u003c/a> from Western Washington University, for instance, showed relationship benefits to completing a challenging puzzle. Reis explains that when people take on difficult activities together, they are learning, and they associate the accompanying satisfying feeling with their partner.\u003c/p>\n\u003cp>Aron says that challenging activities give us a sense of individual growth, what he calls “self-expansion,”and he thinks that could be critical for staying happy in a relationship.\u003c/p>\n\u003cp>The results from the Western Washington puzzle study also showed that the difficulty level of an activity matters. Couples in the study were assigned either an easy, moderately difficult or really hard puzzle. Only the couples who did the moderately difficult puzzle showed an increase in self-reported relationship quality. Couples who did the easy puzzle or the really hard puzzle gained little to no benefit.\u003c/p>\n\u003cp>So picking an activity that is too easy and provides no opportunity to gain new skills likely won’t have a significant impact on the relationship, Reis says.\u003c/p>\n\u003cp>“You want to feel like you are growing with your partner. Going to the movies or the mall probably won’t cut it.”\u003c/p>\n\u003cp>Likewise, an activity that’s too difficult won’t help, because it’s frustrating.\u003c/p>\n\u003cp>Aron says he takes his own findings to heart. He and his wife have been together for as long as he’s been conducting research — 40 years. He says they keep a list of activities they want to try together, and they plan on taking an improv class later this year.\u003c/p>\n\u003cp>\u003cstrong>So What About Melissa and Joseph?\u003c/strong>\u003c/p>\n\u003cp>Well, they recently went “\u003ca href=\"https://www.youtube.com/watch?v=JXDpqLMJhJo&ab_channel=BellyakKayaks\" target=\"_blank\" rel=\"noopener noreferrer\">bellyaking\u003c/a>” together, a sport in which participants paddle themselves head-first down a river while lying on plastic, form-fitting kayaks. It was something neither of them had ever tried before.\u003c/p>\n\u003cp>“Afterward I felt this positive kind of connection,” Melissa says, adding she thinks the research on maintaining relationship satisfaction is pointing to a true phenomenon. “There’s definitely a difference in how it makes you feel about your partner. For me it was a feeling of bonding. And a nervous excitement for both of us, knowing that he wasn’t great at it and I wasn’t great at it, but that we both were trying it together.”\u003c/p>\n\u003cp>Doing exciting things won’t save a relationship overnight, Reis cautions. He recommends scheduling regular date nights and using other strategies, such as practicing respect, validation, and responsiveness, as well.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>But Melissa and Joseph believe that finding time for challenging activities has been an important part of rebuilding their connection. And they say they are looking for more exciting things to do in what they hope will be a long future together.\u003c/p>\n\n",
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"headline": "How Do Couples Stay Happy in a Relationship? Science Has an Answer",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cem>This story was originally published June 1, 2017.\u003c/em>\u003c/p>\n\u003cp>Melissa Allen and her boyfriend, Joseph Hart, were back from playing “\u003ca href=\"https://breakoutgames.com/\" target=\"_blank\" rel=\"noopener noreferrer\">Breakout\u003c/a>, ” a game that required them to be handcuffed to a bench in a locked room. Provided with clues hidden in locked boxes and drawers, they were then given an hour to escape.\u003c/p>\n\u003caside class=\"pullquote alignright\">Researchers have found positive romantic effects when couples take on exciting and challenging activities as a team.\u003c/aside>\n\u003cp>But they were running out of time, stuck on a message about looking at things through a different lens. Melissa says: “Then it suddenly dawned on us!\"\u003c/p>\n\u003cp>They had to look through a camera to read a secret message, hidden in the text of a newspaper. That gave them the key to solving the final riddle, and the answer contained the combination to the door lock.\u003c/p>\n\u003cp>Out they went, with seven seconds to spare.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“It was really great,” says Melissa. “I felt like we were working together as a team.”\u003c/p>\n\u003cp>Melissa and Joseph, who live in Asheville, North Carolina, didn’t play the game just because it sounded fun. Melissa had told me they'd been feeling disconnected for months. Having read up on the topic of attraction and relationship satisfaction after my own failed relationship, I suggested they do something exciting together. While that may seem like somewhat pedestrian advice, it's also what the research suggests for rekindling a romantic flame that had nearly burned itself out.\u003c/p>\n\u003cp>\u003cstrong>‘I Knew I Wanted to Date Her’\u003c/strong>\u003c/p>\n\u003cp>The arc of Melissa and Joseph's relationship may seem familiar. The two had met five years ago. Joseph, without the benefit of even a conversation between them, was immediately smitten.\u003c/p>\n\u003caside class=\"pullquote alignright\">Results from one study showed couples who completed an exciting activity together reported increased feelings of passionate love and relationship satisfaction, whereas those who performed a mundane task showed no increase.\u003c/aside>\n\u003cp>“I thought she was beautiful,” he says. “Like almost too perfect to be human. I knew I wanted to date her.”\u003c/p>\n\u003cp>Melissa was slower to warm up to the idea. She was already seeing someone, and Joseph had been nowhere on her romantic radar. But when he discovered Melissa's relationship had ended, he seized the opportunity and asked her out.\u003c/p>\n\u003cp>Eight months later, they were living together.\u003c/p>\n\u003cp>They’ve now been together for a year-and-a-half. But that initial attraction has started to fade.\u003c/p>\n\u003cp>“We probably don’t spend as much time together as we used to,” Melissa says.\u003c/p>\n\u003cp>Whether that’s the cause or the effect of feeling less connected, she can't say.\u003c/p>\n\u003cp>\u003cstrong>Physical Excitation and Romantic Interest\u003c/strong>\u003c/p>\n\u003cp>Melissa's earliest memory of Joseph is from the day she decided to run a half-marathon on the gym treadmill and saw him working as a trainer.\u003c/p>\n\u003cp>While most people know that initial romantic interest is \u003ca href=\"http://onlinelibrary.wiley.com/doi/10.1111/j.1467-6494.2009.00570.x/full\" target=\"_blank\" rel=\"noopener noreferrer\">highly influenced by physical appearance\u003c/a>, what is less well-known is that attraction is also influenced by our own bodily state. When we are physically aroused — not sexually, but through stress, excitement, or exercise — we may find others more romantically appealing than we would under calmer circumstances.\u003c/p>\n\u003cfigure id=\"attachment_401557\" class=\"wp-caption alignright\" style=\"max-width: 465px\">\u003ca href=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/06/MelissaJosephMarathon3.jpg\">\u003cimg class=\"wp-image-401557 size-full\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/06/MelissaJosephMarathon3.jpg\" alt=\"\" width=\"465\" height=\"620\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/06/MelissaJosephMarathon3.jpg 465w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/MelissaJosephMarathon3-160x213.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/MelissaJosephMarathon3-240x320.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/MelissaJosephMarathon3-375x500.jpg 375w\" sizes=\"(max-width: 465px) 100vw, 465px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Joseph and Melissa at a marathon. (Courtesy Joseph Hart and Melissa Allen)\u003c/figcaption>\u003c/figure>\n\u003cp>The first \u003ca href=\"http://psycnet.apa.org/psycinfo/1975-03016-001\" target=\"_blank\" rel=\"noopener noreferrer\">study\u003c/a> demonstrating the effect of physical arousal on attraction was published in 1974. Social psychologists Arthur Aron and Donald Dutton sent a women to stand in the middle of the \u003ca href=\"https://www.capbridge.com/\" target=\"_blank\" rel=\"noopener noreferrer\">Capilano suspension bridge\u003c/a>, near Vancouver. The bridge, long and narrow, spans a 230-foot-deep canyon and sways when people cross it.\u003c/p>\n\u003cp>“You walk over it and you’re a little scared,” Aron says.\u003c/p>\n\u003cp>In the study, the researchers had a woman stop men in the middle of the bridge to fill out a survey. After they did, the woman gave each man her name and phone number.\u003c/p>\n\u003cp>Then Aron and Dutton sent the same woman to stand in the middle of a shorter, sturdier bridge in the same park and repeat the process.\u003c/p>\n\u003cp>The results? The men who met the woman in the middle of the swaying suspension bridge were four times more likely to call her up afterward than those who met her on the sturdy bridge. The researchers concluded that the higher rate was evidence the men from the suspension bridge were more attracted to the interviewer.\u003c/p>\n\u003cp>“The idea is that you are physiologically stirred up when you meet this person,” Aron says. “And because you associate the feeling of arousal with that person, you think, “Oh, I’m attracted to her… that's why I’m stirred up.’ ”\u003c/p>\n\u003cp>Aron says the phenomenon — which he calls misattribution of arousal — has been replicated in other contexts, in both men and women. In one study the effect was induced by \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/14574097\" target=\"_blank\" rel=\"noopener noreferrer\">having participants run on a treadmill\u003c/a> to increase their heart rate; another \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/14574097\" target=\"_blank\" rel=\"noopener noreferrer\">study\u003c/a> documented greater physical attraction in nonromantic theme-park visitors exiting a roller coaster. Arousal-attraction effects have been found in animals, as well. Male prairie voles, known for lifelong mating, were found to be \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC38169/\" target=\"_blank\" rel=\"noopener noreferrer\">more likely\u003c/a> to pair bond with the first female they encountered if they were first put into a tub of water and forced to swim.\u003c/p>\n\u003cp>While physical excitement can stir initial romantic interest, other types of activities can help couples add a jolt happiness to their existing relationship.\u003c/p>\n\u003cp>\u003cstrong>How to Add the Happy\u003c/strong>\u003c/p>\n\u003cp>In the early ‘90s, Aron and his colleagues conducted a \u003ca href=\"http://journals.sagepub.com/doi/abs/10.1177/026540759301000205\" target=\"_blank\" rel=\"noopener noreferrer\">study\u003c/a> with 53 married couples. They had the pairs rate activities like skiing, hiking, and attending a play as either “exciting” or “pleasant.” The researchers then assigned each couple, over a 10-week period, to engage in only the exciting or only the pleasant activities for 1.5 hours each week.\u003c/p>\n\u003cp>At the end of the 10 weeks, questionnaires filled out by the couples who did the exciting activities showed a small but statistically significant increase in their level of marital satisfaction. Those who did the pleasant activities actually showed slight decreases. (It’s perhaps telling that activities couples commonly participate in together, such as visiting friends, watching a movie, and eating out, tended to be placed in the “pleasant” bucket.)\u003c/p>\n\u003cp>Aron and his colleagues replicated the effect in a more rigorous \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmed/10707334\" target=\"_blank\" rel=\"noopener noreferrer\">experiment\u003c/a> in the lab. Couples came into the laboratory and completed a seven-minute activity together. Half of the couples went through an obstacle course on their hands and knees, velcroed to each other at the wrists and feet and having to carry an object without using their hands. The other half of the couples completed a mundane ball-rolling task.\u003c/p>\n\u003cfigure id=\"attachment_401493\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/06/NovelActivitiesTaskCrop.jpg\">\u003cimg class=\"size-large wp-image-401493\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-1020x679.jpg\" alt=\"\" width=\"640\" height=\"426\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-1020x679.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-768x511.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-960x639.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop-520x346.jpg 520w, https://ww2.kqed.org/app/uploads/sites/13/2017/06/NovelActivitiesTaskCrop.jpg 1152w\" sizes=\"(max-width: 640px) 100vw, 640px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Researcher and partner test out a challenging obstacle course for a study on relationship satisfaction. (Courtesy Arthur Aron)\u003c/figcaption>\u003c/figure>\n\u003cp>Results from the study showed the couples who completed the exciting activity reported increased feelings of passionate love and relationship satisfaction immediately afterward, whereas those who performed the mundane task showed no increase. The couples who completed the exciting activity also used more positive language with one another.\u003c/p>\n\u003cp>While the researchers did not measure whether those immediate positive effects lasted, Harry Reis, a social psychologist at the University of Rochester who studies romantic relationships, says taking on exciting activities could have “long-term carryover benefits.” In fact, a 2013 \u003ca href=\"http://psycnet.apa.org/journals/cfp/2/1/34/\" target=\"_blank\" rel=\"noopener noreferrer\">study\u003c/a> found that after a four-week intervention, couples who jointly took part in regular exciting activities not only reported higher relationship satisfaction afterward, but also maintained some of that added happiness four months later.\u003c/p>\n\u003caside class=\"pullquote alignright\">'There’s definitely a difference in how it makes you feel about your partner ... knowing that he wasn’t great at it and I wasn’t great at it, but that we both were trying it together.'\u003c/aside>\n\u003cp>Both Aron and Reis are quick to point out that the long-term benefits of undertaking exciting activities are not due to physical excitation. Physical excitement has short-term effects on our physical attraction. But the longer-term relationship benefits observed in these studies come from the novelty and challenge that the activities provide, the researchers said.\u003c/p>\n\u003cp>The activity doesn’t have to be physically arousing at all to see the effects on overall relationship satisfaction, Reis says. “You could get the same effects from doing something cognitively challenging.”\u003c/p>\n\u003cp>A 2014 \u003ca href=\"http://onlinelibrary.wiley.com/doi/10.1111/pere.12062/abstract\" target=\"_blank\" rel=\"noopener noreferrer\">study\u003c/a> from Western Washington University, for instance, showed relationship benefits to completing a challenging puzzle. Reis explains that when people take on difficult activities together, they are learning, and they associate the accompanying satisfying feeling with their partner.\u003c/p>\n\u003cp>Aron says that challenging activities give us a sense of individual growth, what he calls “self-expansion,”and he thinks that could be critical for staying happy in a relationship.\u003c/p>\n\u003cp>The results from the Western Washington puzzle study also showed that the difficulty level of an activity matters. Couples in the study were assigned either an easy, moderately difficult or really hard puzzle. Only the couples who did the moderately difficult puzzle showed an increase in self-reported relationship quality. Couples who did the easy puzzle or the really hard puzzle gained little to no benefit.\u003c/p>\n\u003cp>So picking an activity that is too easy and provides no opportunity to gain new skills likely won’t have a significant impact on the relationship, Reis says.\u003c/p>\n\u003cp>“You want to feel like you are growing with your partner. Going to the movies or the mall probably won’t cut it.”\u003c/p>\n\u003cp>Likewise, an activity that’s too difficult won’t help, because it’s frustrating.\u003c/p>\n\u003cp>Aron says he takes his own findings to heart. He and his wife have been together for as long as he’s been conducting research — 40 years. He says they keep a list of activities they want to try together, and they plan on taking an improv class later this year.\u003c/p>\n\u003cp>\u003cstrong>So What About Melissa and Joseph?\u003c/strong>\u003c/p>\n\u003cp>Well, they recently went “\u003ca href=\"https://www.youtube.com/watch?v=JXDpqLMJhJo&ab_channel=BellyakKayaks\" target=\"_blank\" rel=\"noopener noreferrer\">bellyaking\u003c/a>” together, a sport in which participants paddle themselves head-first down a river while lying on plastic, form-fitting kayaks. It was something neither of them had ever tried before.\u003c/p>\n\u003cp>“Afterward I felt this positive kind of connection,” Melissa says, adding she thinks the research on maintaining relationship satisfaction is pointing to a true phenomenon. “There’s definitely a difference in how it makes you feel about your partner. For me it was a feeling of bonding. And a nervous excitement for both of us, knowing that he wasn’t great at it and I wasn’t great at it, but that we both were trying it together.”\u003c/p>\n\u003cp>Doing exciting things won’t save a relationship overnight, Reis cautions. He recommends scheduling regular date nights and using other strategies, such as practicing respect, validation, and responsiveness, as well.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>But Melissa and Joseph believe that finding time for challenging activities has been an important part of rebuilding their connection. And they say they are looking for more exciting things to do in what they hope will be a long future together.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "When Wounds Won’t Heal, Therapies Spread — To The Tune Of $5 Billion",
"title": "When Wounds Won’t Heal, Therapies Spread — To The Tune Of $5 Billion",
"headTitle": "KQED Future of You | KQED Science",
"content": "\u003cp>PHILADELPHIA — Carol Emanuele beat cancer. But for the past two years, she has been fighting her toughest battle yet. She has an open wound on the bottom of her foot that leaves her unable to walk and prone to deadly infection.\u003c/p>\n\u003cp>In an effort to treat her diabetic wound, doctors at a Philadelphia clinic have prescribed a dizzying array of treatments. Freeze-dried placenta. Penis foreskin cells. High doses of pressurized oxygen. And those are just a few of the treatment options patients face.\u003c/p>\n\u003cp>“I do everything, but nothing seems to work,” said Emanuele, 59, who survived stage 4 melanoma in her 30s. “I beat cancer, but this is worse.”\u003c/p>\n\u003cp>The doctors who care for the 6.5 million patients with chronic wounds know the depths of their struggles. Their open, festering wounds don’t heal for months and sometimes years, leaving bare bones and tendons that evoke disgust even among their closest relatives.\u003c/p>\n\u003cfigure class=\"related\">\u003c/figure>\n\u003cp>Many patients end up immobilized, unable to work and dependent on Medicare and Medicaid. In their quest to heal, they turn to expensive and sometimes painful procedures, and products that often don’t work\u003cstrong>.\u003c/strong>\u003c/p>\n\u003caside class=\"pullquote alignright\">'It’s an amazingly crappy area in terms of the quality of research. I don’t think they have anything that involves singing to wounds, but it wouldn’t shock me.”\u003ccite>Sean Tunis, chief medical officer for Medicare from 2002 to 2005\u003c/cite>\u003c/aside>\n\u003cp>According to some estimates, Medicare alone spends at least $25 billion a year treating these wounds. But many widely used treatments aren’t supported by credible research. The $5 billion-a-year wound care business booms while some products might prove little more effective than the proverbial snake oil. The vast majority of the studies are funded or conducted by companies who manufacture these products. At the same time, independent academic research is scant for a growing problem.\u003c/p>\n\u003cfigure id=\"attachment_434681\" class=\"wp-caption aligncenter\" style=\"max-width: 770px\">\u003cimg class=\"size-full wp-image-434681\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/08/chronic-wounds-3.jpg\" alt=\"\" width=\"770\" height=\"513\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-3.jpg 770w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-3-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-3-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-3-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-3-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-3-520x346.jpg 520w\" sizes=\"(max-width: 770px) 100vw, 770px\">\u003cfigcaption class=\"wp-caption-text\">Carol Emanuele sits at home in Philadelphia. Emanuele was diagnosed with diabetes in 2015 and also survived stage 4 melanoma when she was 38. \u003ccite>(Eileen Blass for Kaiser Health News)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“It’s an amazingly crappy area in terms of the quality of research,” said \u003ca href=\"http://www.cmtpnet.org/about/team/\">Sean Tunis\u003c/a>, who as chief medical officer for Medicare from 2002 to 2005 grappled with coverage decisions on wound care. “I don’t think they have anything that involves singing to wounds, but it wouldn’t shock me.”\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003ca href=\"http://journals.lww.com/plasreconsurg/Abstract/2016/09001/Dressing_and_Diabetic_Foot_Ulcers___A_Current.21.aspx\" target=\"_blank\" rel=\"noopener noreferrer\">A 2016 review\u003c/a> of treatment for diabetic foot ulcers found “few published studies were of high quality, and the majority were susceptible to bias.” The review team included William Jeffcoate, a professor with the Department of Diabetes and Endocrinology at Nottingham University Hospitals Trust. Jeffcoate has overseen several reviews of the same treatment since 2006 and concluded that “the evidence to support many of the therapies that are in routine use is poor.”\u003c/p>\n\u003cp>A separate \u003ca href=\"https://www.effectivehealthcare.ahrq.gov/ehc/products/367/1737/venous-ulcers-treatment-report-erratum-140127.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">Health and Human Services review of 10,000 studies\u003c/a> examining treatment of leg wounds known as venous ulcers found that only 60 of them met basic scientific standards. Of the 60, most were so shoddy that their results were unreliable.\u003c/p>\n\u003cp>While scientists struggle to come up with treatments that are more effective, patients with chronic wounds are dying.\u003c/p>\n\u003cp>The five-year mortality rate for patients with some types of diabetic wounds is more than 50 percent higher than breast and colon cancers, according to an analysis led by \u003ca href=\"http://medicine.arizona.edu/person/david-g-armstrong-dpm-md-phd\" target=\"_blank\" rel=\"noopener noreferrer\">Dr. David Armstrong\u003c/a>, a professor of surgery and director of the Southern Arizona Limb Salvage Alliance.\u003c/p>\n\u003cp>Open wounds are a particular problem for people with diabetes because a small cut may turn into an open crater that grows despite conservative treatment, such as removal of dead tissue to stimulate new cell growth.\u003c/p>\n\u003cp>More than half of diabetic ulcers become infected, 20 percent lead to amputation, and, according to Armstrong, about 40 percent of patients with diabetic foot ulcers have a \u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJMra1615439\" target=\"_blank\" rel=\"noopener noreferrer\">recurrence\u003c/a> within one year after healing.\u003c/p>\n\u003cp>“It’s true that we may be paying for treatments that don’t work,” said Tunis, now CEO of the nonprofit Center for Medical Technology Policy, which has worked with the federal government to improve research. “But it’s just as tragic that we could be missing out on treatments that do work by failing to conduct adequate clinical studies.”\u003c/p>\n\u003cfigure id=\"attachment_434682\" class=\"wp-caption aligncenter\" style=\"max-width: 770px\">\u003cimg class=\"size-full wp-image-434682\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/08/chronic-wounds-7.jpg\" alt=\"\" width=\"770\" height=\"513\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-7.jpg 770w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-7-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-7-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-7-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-7-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-7-520x346.jpg 520w\" sizes=\"(max-width: 770px) 100vw, 770px\">\u003cfigcaption class=\"wp-caption-text\">Navy surgeon Capt. Pat McKay examines the healing progress of skin grafts on Navy Cmdr. Peter Snyder at Walter Reed National Military Medical Center. \u003ccite>(H. Darr Beiser for Kaiser Health News)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Although doctors and researchers have been calling on the federal government to step in for at least a decade, the National Institutes of Health and the Veterans Affairs and Defense departments haven’t responded with any significant research initiative.\u003c/p>\n\u003cp>“The bottom line is that there is no pink ribbon to raise awareness for festering, foul-smelling wounds that don’t heal,” said Caroline Fife, a wound care doctor in Texas. “No movie star wants to be the poster child for this, and the patients … are old, sick, paralyzed and, in many cases, malnourished.”\u003c/p>\n\u003cp>The NIH estimates that it invests more than $32 billion a year in medical research. But an independent review estimated it spends 0.1 percent studying wound treatment. That’s about the same amount of money NIH spends on Lyme disease, even though the tick-borne infection costs the medical system one-tenth of what wound care does, according to an analysis led by Dr. Robert Kirsner, chair and Harvey Blank professor at the University of Miami Department of Dermatology and Cutaneous Surgery.\u003c/p>\n\u003cp>Emma Wojtowicz, an NIH spokeswoman, said the agency supports chronic wound care, but she said she couldn’t specify how much money is spent on research because it’s not a separate funding category.\u003c/p>\n\u003cp>“Chronic wounds don’t fit neatly into any funding categories,” said Jonathan Zenilman, chief of the division for infectious diseases at Johns Hopkins Bayview Medical Center and a member of the team that analyzed the 10,000 studies. “The other problem is it’s completely unsexy. It’s not appreciated as a major and growing health care problem that needs immediate attention, even though it is.”\u003c/p>\n\u003cp>Commercial manufacturers have stepped in with products that the FDA permits to come to market without the same rigorous clinical evidence as pharmaceuticals. The companies have little incentive to perform useful comparative studies.\u003c/p>\n\u003cp>“There are hundreds and hundreds of these products, but no one knows which is best,” said \u003ca href=\"https://medicine.duke.edu/faculty/robert-m-califf\" target=\"_blank\" rel=\"noopener noreferrer\">Robert Califf\u003c/a>, who stepped down as Food and Drug Administration commissioner for the Obama administration in January. “You can freeze it, you can warm it, you can ultrasound it, and [Medicare] pays for all of this.”\u003c/p>\n\u003cp>When Medicare resisted coverage for a treatment known as electrical stimulation, Medicare beneficiaries sued, and the agency changed course.\u003c/p>\n\u003cp>“The ruling forced Medicare to reverse its decision based on the fact that the evidence was no crappier than other stuff we were paying for,” said Tunis, the former Medicare official.\u003c/p>\n\u003cp>In another case, Medicare decided to cover a method called “noncontact normothermic wound therapy,” despite concerns that it wasn’t any more effective than traditional treatment, Tunis said.\u003c/p>\n\u003cp>[contextly_sidebar id=\"IUOicXLNcvlWAf4KdlNL1vPURGpnGL3B\"]“It’s basically like a Dixie cup you put over a wound so people won’t mess with it,” he said. “It was one of those ‘magically effective’ treatments in whatever studies were done at the time, but it never ended up being part of a good-quality, well-designed study.”\u003c/p>\n\u003cp>The companies that sell the products and academic researchers themselves disagree over the methodology and the merits of existing scientific research.\u003c/p>\n\u003cp>\u003ca href=\"http://www.serenagroups.com/?q=node/39\">Thomas Serena\u003c/a>, one of the most prolific researchers of wound-healing products, said he tries to pick the healthiest patients for inclusion in studies, limiting him to a pool of about 10 percent of his patient population.\u003c/p>\n\u003cp>“We design it so everyone in the trial has a good chance of healing,” he said.\u003c/p>\n\u003cp>“If it works, like, 80 or 90 percent of the time, that’s because I pick those patients,” said Serena, who has received funding from manufacturers.\u003c/p>\n\u003cp>But critics say the approach makes it more difficult to know what works on the sickest patients in need of the most help.\u003c/p>\n\u003cp>\u003ca href=\"https://smhs.gwu.edu/news/gw%E2%80%99s-gerald-lazarus-named-22nd-recipient-david-martin-carter-mentor-award\">Gerald Lazarus\u003c/a>, a dermatologist who led the HHS review as then-director of Johns Hopkins Bayview Medical Center wound care clinic, said Serena’s assertion is “misleading. That’s not a legitimate way to conduct research.” He added that singling out only healthy patients skews the results.\u003c/p>\n\u003cp>The emphasis on healthier patients in clinical trials also creates unrealistic expectations for insurers, said Fife.\u003c/p>\n\u003cp>“The expensive products … brought to market are then not covered by payers for use in sick patients, based on the irrefutable but Kafka-esque logic that we don’t know if they work in sick people,” she said.\u003c/p>\n\u003cp>“Among very sick patients in the real world, it may be hard to find a product that’s clearly superior to the others in terms of its effectiveness, but we will probably never find that out since we will never get the funding to analyze the data,” added Fife, who has struggled to get government funding for a \u003ca href=\"https://www.uswoundregistry.com/Home\" target=\"_blank\" rel=\"noopener noreferrer\">nonprofit wound registry\u003c/a> she heads. Not surprisingly, she said, the registry data demonstrate that most treatments don’t work as well on patients as shown in clinical trials.\u003c/p>\n\u003cp>Patients say they often feel overwhelmed when confronted with countless treatments.\u003c/p>\n\u003cp>“Even though I’m a doctor and my wife is a nurse, we found this to be complicated,” said Navy Cmdr. Peter Snyder, a radiologist who is recovering from necrotizing fasciitis, also known as flesh-eating bacteria. “I can’t imagine how regular patients handle this. I think it would be devastating.”\u003c/p>\n\u003cp>To heal wounds on his arms and foot, Snyder relied on various treatments, including skin-graft surgery, special collagen bandages and a honey-based product. His doctor who treats him at Walter Reed National Military Medical Center predicted he would fully recover.\u003c/p>\n\u003cp>Such treatments aren’t always successful. Although Emanuele’s wound left by an amputation (of her big toe) healed, another wound on the bottom of her foot has not.\u003c/p>\n\u003cp>Recently, she looked back at her calendar and marveled at the dozens of treatments she has received, many covered by Medicare and Medicaid.\u003c/p>\n\u003cp>Some seem promising, like wound coverings made of freeze-dried placenta obtained during births by cesarean section. Others, not — including one plastic bandage that her nurse agreed made her wound worse.\u003c/p>\n\u003cp>Emanuele was told she needed to undergo high doses of oxygen in a hyperbaric chamber, a high-cost treatment hospitals are increasingly relying on for diabetic wounds. The total cost: about $30,000, according to a Medicare invoice.\u003c/p>\n\u003cp>Some research has indicated that \u003ca href=\"http://khn.org/news/hospitals-put-more-stock-in-hyperbaric-therapy-for-diabetics-despite-concerns/\" target=\"_blank\" rel=\"noopener noreferrer\">hyperbaric therapy works\u003c/a>, but last year a major study concluded it wasn’t any more effective than traditional treatment.\u003c/p>\n\u003cp>“Don’t get me wrong, I am grateful for the care I get,” Emanuele said. “It’s just that sometimes I’m not sure they know what they’re using on me works. I feel like a guinea pig.”\u003c/p>\n\u003cp>Confined to a wheelchair because of her wounds, she fell moving from the bathroom to her wheelchair and banged her leg, interrupting the healing process. Days later, she was hospitalized again. This time, she got a blood infection from bacteria entering through an ulcer.\u003c/p>\n\u003cp>She has since recovered and is now back on the wound care routine at her house.\u003c/p>\n\u003cp>“I don’t want to live like this forever,” she said. “Sometimes I feel like I have I no identity. I have become my wound.”\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>KHN’s coverage of end-of-life and serious illness issues is supported by \u003ca href=\"https://www.moore.org/\" target=\"_blank\" rel=\"noopener noreferrer\">The Gordon and Betty Moore Foundation\u003c/a>.\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>PHILADELPHIA — Carol Emanuele beat cancer. But for the past two years, she has been fighting her toughest battle yet. She has an open wound on the bottom of her foot that leaves her unable to walk and prone to deadly infection.\u003c/p>\n\u003cp>In an effort to treat her diabetic wound, doctors at a Philadelphia clinic have prescribed a dizzying array of treatments. Freeze-dried placenta. Penis foreskin cells. High doses of pressurized oxygen. And those are just a few of the treatment options patients face.\u003c/p>\n\u003cp>“I do everything, but nothing seems to work,” said Emanuele, 59, who survived stage 4 melanoma in her 30s. “I beat cancer, but this is worse.”\u003c/p>\n\u003cp>The doctors who care for the 6.5 million patients with chronic wounds know the depths of their struggles. Their open, festering wounds don’t heal for months and sometimes years, leaving bare bones and tendons that evoke disgust even among their closest relatives.\u003c/p>\n\u003cfigure class=\"related\">\u003c/figure>\n\u003cp>Many patients end up immobilized, unable to work and dependent on Medicare and Medicaid. In their quest to heal, they turn to expensive and sometimes painful procedures, and products that often don’t work\u003cstrong>.\u003c/strong>\u003c/p>\n\u003caside class=\"pullquote alignright\">'It’s an amazingly crappy area in terms of the quality of research. I don’t think they have anything that involves singing to wounds, but it wouldn’t shock me.”\u003ccite>Sean Tunis, chief medical officer for Medicare from 2002 to 2005\u003c/cite>\u003c/aside>\n\u003cp>According to some estimates, Medicare alone spends at least $25 billion a year treating these wounds. But many widely used treatments aren’t supported by credible research. The $5 billion-a-year wound care business booms while some products might prove little more effective than the proverbial snake oil. The vast majority of the studies are funded or conducted by companies who manufacture these products. At the same time, independent academic research is scant for a growing problem.\u003c/p>\n\u003cfigure id=\"attachment_434681\" class=\"wp-caption aligncenter\" style=\"max-width: 770px\">\u003cimg class=\"size-full wp-image-434681\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/08/chronic-wounds-3.jpg\" alt=\"\" width=\"770\" height=\"513\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-3.jpg 770w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-3-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-3-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-3-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-3-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-3-520x346.jpg 520w\" sizes=\"(max-width: 770px) 100vw, 770px\">\u003cfigcaption class=\"wp-caption-text\">Carol Emanuele sits at home in Philadelphia. Emanuele was diagnosed with diabetes in 2015 and also survived stage 4 melanoma when she was 38. \u003ccite>(Eileen Blass for Kaiser Health News)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“It’s an amazingly crappy area in terms of the quality of research,” said \u003ca href=\"http://www.cmtpnet.org/about/team/\">Sean Tunis\u003c/a>, who as chief medical officer for Medicare from 2002 to 2005 grappled with coverage decisions on wound care. “I don’t think they have anything that involves singing to wounds, but it wouldn’t shock me.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003ca href=\"http://journals.lww.com/plasreconsurg/Abstract/2016/09001/Dressing_and_Diabetic_Foot_Ulcers___A_Current.21.aspx\" target=\"_blank\" rel=\"noopener noreferrer\">A 2016 review\u003c/a> of treatment for diabetic foot ulcers found “few published studies were of high quality, and the majority were susceptible to bias.” The review team included William Jeffcoate, a professor with the Department of Diabetes and Endocrinology at Nottingham University Hospitals Trust. Jeffcoate has overseen several reviews of the same treatment since 2006 and concluded that “the evidence to support many of the therapies that are in routine use is poor.”\u003c/p>\n\u003cp>A separate \u003ca href=\"https://www.effectivehealthcare.ahrq.gov/ehc/products/367/1737/venous-ulcers-treatment-report-erratum-140127.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">Health and Human Services review of 10,000 studies\u003c/a> examining treatment of leg wounds known as venous ulcers found that only 60 of them met basic scientific standards. Of the 60, most were so shoddy that their results were unreliable.\u003c/p>\n\u003cp>While scientists struggle to come up with treatments that are more effective, patients with chronic wounds are dying.\u003c/p>\n\u003cp>The five-year mortality rate for patients with some types of diabetic wounds is more than 50 percent higher than breast and colon cancers, according to an analysis led by \u003ca href=\"http://medicine.arizona.edu/person/david-g-armstrong-dpm-md-phd\" target=\"_blank\" rel=\"noopener noreferrer\">Dr. David Armstrong\u003c/a>, a professor of surgery and director of the Southern Arizona Limb Salvage Alliance.\u003c/p>\n\u003cp>Open wounds are a particular problem for people with diabetes because a small cut may turn into an open crater that grows despite conservative treatment, such as removal of dead tissue to stimulate new cell growth.\u003c/p>\n\u003cp>More than half of diabetic ulcers become infected, 20 percent lead to amputation, and, according to Armstrong, about 40 percent of patients with diabetic foot ulcers have a \u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJMra1615439\" target=\"_blank\" rel=\"noopener noreferrer\">recurrence\u003c/a> within one year after healing.\u003c/p>\n\u003cp>“It’s true that we may be paying for treatments that don’t work,” said Tunis, now CEO of the nonprofit Center for Medical Technology Policy, which has worked with the federal government to improve research. “But it’s just as tragic that we could be missing out on treatments that do work by failing to conduct adequate clinical studies.”\u003c/p>\n\u003cfigure id=\"attachment_434682\" class=\"wp-caption aligncenter\" style=\"max-width: 770px\">\u003cimg class=\"size-full wp-image-434682\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/08/chronic-wounds-7.jpg\" alt=\"\" width=\"770\" height=\"513\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-7.jpg 770w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-7-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-7-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-7-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-7-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/chronic-wounds-7-520x346.jpg 520w\" sizes=\"(max-width: 770px) 100vw, 770px\">\u003cfigcaption class=\"wp-caption-text\">Navy surgeon Capt. Pat McKay examines the healing progress of skin grafts on Navy Cmdr. Peter Snyder at Walter Reed National Military Medical Center. \u003ccite>(H. Darr Beiser for Kaiser Health News)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Although doctors and researchers have been calling on the federal government to step in for at least a decade, the National Institutes of Health and the Veterans Affairs and Defense departments haven’t responded with any significant research initiative.\u003c/p>\n\u003cp>“The bottom line is that there is no pink ribbon to raise awareness for festering, foul-smelling wounds that don’t heal,” said Caroline Fife, a wound care doctor in Texas. “No movie star wants to be the poster child for this, and the patients … are old, sick, paralyzed and, in many cases, malnourished.”\u003c/p>\n\u003cp>The NIH estimates that it invests more than $32 billion a year in medical research. But an independent review estimated it spends 0.1 percent studying wound treatment. That’s about the same amount of money NIH spends on Lyme disease, even though the tick-borne infection costs the medical system one-tenth of what wound care does, according to an analysis led by Dr. Robert Kirsner, chair and Harvey Blank professor at the University of Miami Department of Dermatology and Cutaneous Surgery.\u003c/p>\n\u003cp>Emma Wojtowicz, an NIH spokeswoman, said the agency supports chronic wound care, but she said she couldn’t specify how much money is spent on research because it’s not a separate funding category.\u003c/p>\n\u003cp>“Chronic wounds don’t fit neatly into any funding categories,” said Jonathan Zenilman, chief of the division for infectious diseases at Johns Hopkins Bayview Medical Center and a member of the team that analyzed the 10,000 studies. “The other problem is it’s completely unsexy. It’s not appreciated as a major and growing health care problem that needs immediate attention, even though it is.”\u003c/p>\n\u003cp>Commercial manufacturers have stepped in with products that the FDA permits to come to market without the same rigorous clinical evidence as pharmaceuticals. The companies have little incentive to perform useful comparative studies.\u003c/p>\n\u003cp>“There are hundreds and hundreds of these products, but no one knows which is best,” said \u003ca href=\"https://medicine.duke.edu/faculty/robert-m-califf\" target=\"_blank\" rel=\"noopener noreferrer\">Robert Califf\u003c/a>, who stepped down as Food and Drug Administration commissioner for the Obama administration in January. “You can freeze it, you can warm it, you can ultrasound it, and [Medicare] pays for all of this.”\u003c/p>\n\u003cp>When Medicare resisted coverage for a treatment known as electrical stimulation, Medicare beneficiaries sued, and the agency changed course.\u003c/p>\n\u003cp>“The ruling forced Medicare to reverse its decision based on the fact that the evidence was no crappier than other stuff we were paying for,” said Tunis, the former Medicare official.\u003c/p>\n\u003cp>In another case, Medicare decided to cover a method called “noncontact normothermic wound therapy,” despite concerns that it wasn’t any more effective than traditional treatment, Tunis said.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>“It’s basically like a Dixie cup you put over a wound so people won’t mess with it,” he said. “It was one of those ‘magically effective’ treatments in whatever studies were done at the time, but it never ended up being part of a good-quality, well-designed study.”\u003c/p>\n\u003cp>The companies that sell the products and academic researchers themselves disagree over the methodology and the merits of existing scientific research.\u003c/p>\n\u003cp>\u003ca href=\"http://www.serenagroups.com/?q=node/39\">Thomas Serena\u003c/a>, one of the most prolific researchers of wound-healing products, said he tries to pick the healthiest patients for inclusion in studies, limiting him to a pool of about 10 percent of his patient population.\u003c/p>\n\u003cp>“We design it so everyone in the trial has a good chance of healing,” he said.\u003c/p>\n\u003cp>“If it works, like, 80 or 90 percent of the time, that’s because I pick those patients,” said Serena, who has received funding from manufacturers.\u003c/p>\n\u003cp>But critics say the approach makes it more difficult to know what works on the sickest patients in need of the most help.\u003c/p>\n\u003cp>\u003ca href=\"https://smhs.gwu.edu/news/gw%E2%80%99s-gerald-lazarus-named-22nd-recipient-david-martin-carter-mentor-award\">Gerald Lazarus\u003c/a>, a dermatologist who led the HHS review as then-director of Johns Hopkins Bayview Medical Center wound care clinic, said Serena’s assertion is “misleading. That’s not a legitimate way to conduct research.” He added that singling out only healthy patients skews the results.\u003c/p>\n\u003cp>The emphasis on healthier patients in clinical trials also creates unrealistic expectations for insurers, said Fife.\u003c/p>\n\u003cp>“The expensive products … brought to market are then not covered by payers for use in sick patients, based on the irrefutable but Kafka-esque logic that we don’t know if they work in sick people,” she said.\u003c/p>\n\u003cp>“Among very sick patients in the real world, it may be hard to find a product that’s clearly superior to the others in terms of its effectiveness, but we will probably never find that out since we will never get the funding to analyze the data,” added Fife, who has struggled to get government funding for a \u003ca href=\"https://www.uswoundregistry.com/Home\" target=\"_blank\" rel=\"noopener noreferrer\">nonprofit wound registry\u003c/a> she heads. Not surprisingly, she said, the registry data demonstrate that most treatments don’t work as well on patients as shown in clinical trials.\u003c/p>\n\u003cp>Patients say they often feel overwhelmed when confronted with countless treatments.\u003c/p>\n\u003cp>“Even though I’m a doctor and my wife is a nurse, we found this to be complicated,” said Navy Cmdr. Peter Snyder, a radiologist who is recovering from necrotizing fasciitis, also known as flesh-eating bacteria. “I can’t imagine how regular patients handle this. I think it would be devastating.”\u003c/p>\n\u003cp>To heal wounds on his arms and foot, Snyder relied on various treatments, including skin-graft surgery, special collagen bandages and a honey-based product. His doctor who treats him at Walter Reed National Military Medical Center predicted he would fully recover.\u003c/p>\n\u003cp>Such treatments aren’t always successful. Although Emanuele’s wound left by an amputation (of her big toe) healed, another wound on the bottom of her foot has not.\u003c/p>\n\u003cp>Recently, she looked back at her calendar and marveled at the dozens of treatments she has received, many covered by Medicare and Medicaid.\u003c/p>\n\u003cp>Some seem promising, like wound coverings made of freeze-dried placenta obtained during births by cesarean section. Others, not — including one plastic bandage that her nurse agreed made her wound worse.\u003c/p>\n\u003cp>Emanuele was told she needed to undergo high doses of oxygen in a hyperbaric chamber, a high-cost treatment hospitals are increasingly relying on for diabetic wounds. The total cost: about $30,000, according to a Medicare invoice.\u003c/p>\n\u003cp>Some research has indicated that \u003ca href=\"http://khn.org/news/hospitals-put-more-stock-in-hyperbaric-therapy-for-diabetics-despite-concerns/\" target=\"_blank\" rel=\"noopener noreferrer\">hyperbaric therapy works\u003c/a>, but last year a major study concluded it wasn’t any more effective than traditional treatment.\u003c/p>\n\u003cp>“Don’t get me wrong, I am grateful for the care I get,” Emanuele said. “It’s just that sometimes I’m not sure they know what they’re using on me works. I feel like a guinea pig.”\u003c/p>\n\u003cp>Confined to a wheelchair because of her wounds, she fell moving from the bathroom to her wheelchair and banged her leg, interrupting the healing process. Days later, she was hospitalized again. This time, she got a blood infection from bacteria entering through an ulcer.\u003c/p>\n\u003cp>She has since recovered and is now back on the wound care routine at her house.\u003c/p>\n\u003cp>“I don’t want to live like this forever,” she said. “Sometimes I feel like I have I no identity. I have become my wound.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>KHN’s coverage of end-of-life and serious illness issues is supported by \u003ca href=\"https://www.moore.org/\" target=\"_blank\" rel=\"noopener noreferrer\">The Gordon and Betty Moore Foundation\u003c/a>.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Video Games May Affect The Brain Differently, Depending On What You Play",
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"content": "\u003cp>People who played action video games that involve first-person shooters, such as Call of Duty and Medal of Honor, experienced shrinkage in a brain region called the hippocampus, according to a study published Tuesday in \u003cem>Molecular\u003c/em> \u003cem>Psychiatry\u003c/em>. That part of the brain is associated with spatial navigation, stress regulation and memory. Playing Super Mario games, in which the noble plumber strives to rescue a princess, had the opposite effect on the hippocampus, causing growth in it.\u003c/p>\n\u003cp>Scientists have done \u003ca href=\"http://journal.frontiersin.org/article/10.3389/fnhum.2017.00248/full#F1\">dozens of studies\u003c/a> looking to see if playing video games affects people's health and behavior. There's some evidence they may improve people's visual short-term memory and eye-hand coordination. But researchers keep looking for negative consequences, too.\u003c/p>\n\u003cp>These researchers first asked 33 participants how often they had played video games in the past year. They scanned people's brains using MRIs, and found that the action video game players, who reported spending an average of 19 hours playing action video games each week, had less gray matter in the hippocampus than non-video game players. The difference was statistically significant.\u003c/p>\n\u003cp>[contextly_sidebar id=\"piE4vSUENHR0hZHdkiOKIhLF9ZgivVMX\"]Then the researchers asked 43 other people who don't usually play video games to spend 90 hours over about 10 weeks playing either action video games or Super Mario games in a controlled setting.\u003c/p>\n\u003cp>People in the group that played action video games lost gray matter in the hippocampus, according to \u003ca href=\"http://en.psy.umontreal.ca/repertoire-departement/vue/west-gregory/\">Gregory West\u003c/a>, the \u003ca href=\"http://www.nature.com/mp/journal/vaop/ncurrent/full/mp2017155a.html?foxtrotcallback=true\">study\u003c/a>'s lead author and an associate professor of psychology at the University of Montreal. And people who played Super Mario games gained gray matter in the hippocampus.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"While we train up this one system, this other system is potentially being neglected and potentially showing signs of atrophy,\" West says.\u003c/p>\n\u003cp>\u003ca href=\"http://jacobsfoundation.org/contacts/simone-kuehn/\">Simone Kuhn\u003c/a>, a professor of neural plasticity at the University Clinic Hamburg-Eppendorf in Germany, says people who play action video games shouldn't be too concerned.\u003c/p>\n\u003cp>\"I would never interpret this finding as a big warning against action video games,\" she says. Why did action video games seem to shrink the hippocampus, while a different type of game seem to have caused it to grow? West and his colleagues have some ideas.\u003c/p>\n\u003cp>The way that each type of video game is designed could play a role, West says.\u003c/p>\n\u003cp>\"In the majority of action video games, there's an onscreen GPS overlaid on the screen,\" West says. \"There's also wayfinding markers overlaid over the environment, and we know from past studies that when people are encouraged to navigate using these cues, really, they're not using their hippocampal memory system to navigate.\"\u003c/p>\n\u003cp>Instead, they're using the caudate nucleus, which is part of the brain's reward system.\u003c/p>\n\u003cp>\"It's kind of like your brain's autopilot, you could think of it that way,\" West says.\u003c/p>\n\u003cp>\"It could be the case that these action video games are encouraging people to favor this reward system over their hippocampal memory system. And then it's become the use-it-or-lose-it type scenario.\"\u003c/p>\n\u003cp>He hopes future research can determine if there's a relationship between the changes he and his colleagues observed and the number of hours a person spends each week playing video games, as well as the extent of the increase or decrease in size of the hippocampus.\u003c/p>\n\u003cp>And for the \u003ca href=\"http://www.pewinternet.org/2015/12/15/gaming-and-gamers/\">1 in 10 Americans\u003c/a> who consider themselves gamers, West has some advice about which games to choose.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"If I had to recommend a type of video game to someone, it would be a 3-D platform or logic puzzle game. The evidence is clear at this point that these games can be beneficial for the brain,\" West says.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Video+Games+May+Affect+The+Brain+Differently%2C+Depending+On+What+You+Play&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>People who played action video games that involve first-person shooters, such as Call of Duty and Medal of Honor, experienced shrinkage in a brain region called the hippocampus, according to a study published Tuesday in \u003cem>Molecular\u003c/em> \u003cem>Psychiatry\u003c/em>. That part of the brain is associated with spatial navigation, stress regulation and memory. Playing Super Mario games, in which the noble plumber strives to rescue a princess, had the opposite effect on the hippocampus, causing growth in it.\u003c/p>\n\u003cp>Scientists have done \u003ca href=\"http://journal.frontiersin.org/article/10.3389/fnhum.2017.00248/full#F1\">dozens of studies\u003c/a> looking to see if playing video games affects people's health and behavior. There's some evidence they may improve people's visual short-term memory and eye-hand coordination. But researchers keep looking for negative consequences, too.\u003c/p>\n\u003cp>These researchers first asked 33 participants how often they had played video games in the past year. They scanned people's brains using MRIs, and found that the action video game players, who reported spending an average of 19 hours playing action video games each week, had less gray matter in the hippocampus than non-video game players. The difference was statistically significant.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>Then the researchers asked 43 other people who don't usually play video games to spend 90 hours over about 10 weeks playing either action video games or Super Mario games in a controlled setting.\u003c/p>\n\u003cp>People in the group that played action video games lost gray matter in the hippocampus, according to \u003ca href=\"http://en.psy.umontreal.ca/repertoire-departement/vue/west-gregory/\">Gregory West\u003c/a>, the \u003ca href=\"http://www.nature.com/mp/journal/vaop/ncurrent/full/mp2017155a.html?foxtrotcallback=true\">study\u003c/a>'s lead author and an associate professor of psychology at the University of Montreal. And people who played Super Mario games gained gray matter in the hippocampus.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"While we train up this one system, this other system is potentially being neglected and potentially showing signs of atrophy,\" West says.\u003c/p>\n\u003cp>\u003ca href=\"http://jacobsfoundation.org/contacts/simone-kuehn/\">Simone Kuhn\u003c/a>, a professor of neural plasticity at the University Clinic Hamburg-Eppendorf in Germany, says people who play action video games shouldn't be too concerned.\u003c/p>\n\u003cp>\"I would never interpret this finding as a big warning against action video games,\" she says. Why did action video games seem to shrink the hippocampus, while a different type of game seem to have caused it to grow? West and his colleagues have some ideas.\u003c/p>\n\u003cp>The way that each type of video game is designed could play a role, West says.\u003c/p>\n\u003cp>\"In the majority of action video games, there's an onscreen GPS overlaid on the screen,\" West says. \"There's also wayfinding markers overlaid over the environment, and we know from past studies that when people are encouraged to navigate using these cues, really, they're not using their hippocampal memory system to navigate.\"\u003c/p>\n\u003cp>Instead, they're using the caudate nucleus, which is part of the brain's reward system.\u003c/p>\n\u003cp>\"It's kind of like your brain's autopilot, you could think of it that way,\" West says.\u003c/p>\n\u003cp>\"It could be the case that these action video games are encouraging people to favor this reward system over their hippocampal memory system. And then it's become the use-it-or-lose-it type scenario.\"\u003c/p>\n\u003cp>He hopes future research can determine if there's a relationship between the changes he and his colleagues observed and the number of hours a person spends each week playing video games, as well as the extent of the increase or decrease in size of the hippocampus.\u003c/p>\n\u003cp>And for the \u003ca href=\"http://www.pewinternet.org/2015/12/15/gaming-and-gamers/\">1 in 10 Americans\u003c/a> who consider themselves gamers, West has some advice about which games to choose.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"If I had to recommend a type of video game to someone, it would be a 3-D platform or logic puzzle game. The evidence is clear at this point that these games can be beneficial for the brain,\" West says.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Video+Games+May+Affect+The+Brain+Differently%2C+Depending+On+What+You+Play&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Randomized controlled trials have long been held up as the “gold standard” of clinical research. There’s no doubt that well-designed trials are effective tools for testing a \u003ca href=\"https://www.statnews.com/2017/07/11/trump-fda-gottlieb-standards/\">new drug\u003c/a>, device, or other intervention. Yet much of modern medical care — perhaps most of it — is not based on randomized controlled trials and likely never will be. In this “dark matter” of clinical medicine, past practices and anecdotes all too often rule. We need to look beyond trials to improve medical care in these areas.\u003c/p>\n\u003cp>In a randomized controlled trial (RCT), participants are randomly assigned to receive either the treatment under investigation or, as a control, a placebo or the current standard treatment. The randomization process helps ensure that the various groups in the study are virtually identical in age, gender, socioeconomic status, and other variables. This minimizes the potential for bias and the influence of confounding factors.\u003c/p>\n\u003caside class=\"pullquote alignright\">'We need to look beyond trials to improve medical care in these areas.'\u003c/aside>\n\u003cp>Despite their strengths, RCTs have substantial limitations. They can be very expensive to run. They can take many years to complete, and even then may not last long enough to assess the long-term effect of an intervention such as vaccine immunity, or to detect rare or long-term adverse effects. Findings from RCTs may not be valid beyond the study population — a trial that included a high-risk population in order to maximize the possibility of detecting an effect, for example, may not be relevant to a low-risk population. RCTs may not be practical for population-wide interventions and often aren’t relevant for urgent health issues such as infectious disease outbreaks, for which public health decisions must be made quickly.\u003c/p>\n\u003cp>\u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJMra1614394\" target=\"_blank\" rel=\"noopener noreferrer\">As I write this week\u003c/a> in the \u003cem>New England Journal of Medicine\u003c/em>, several other study types can generate data that are at least as effective as RCTs, or may be even more effective, at generating evidence for action, especially related to population-wide interventions.\u003c/p>\n\u003cp>The effectiveness of the nasal spray flu vaccine (also called the live attenuated vaccine) is a dramatic illustration of the limitations of RCTs. Trials suggested that the nasal spray vaccine was superior to flu shots, at least for some populations. In subsequent years, however, \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0025839/\" target=\"_blank\" rel=\"noopener noreferrer\">observational studies\u003c/a>, including \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0025837/\" target=\"_blank\" rel=\"noopener noreferrer\">case-control studies\u003c/a>, documented that, for reasons which are still unclear, the nasal spray \u003cem>wasn’t \u003c/em>effective against the flu. That led the Advisory Committee on Immunization Practices to recommend, and the CDC to accept the recommendation, that the nasal spray flu vaccine \u003ca href=\"https://www.cdc.gov/media/releases/2016/s0622-laiv-flu.html\" target=\"_blank\" rel=\"noopener noreferrer\">not be used in the 2016-2017 flu season\u003c/a>.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>[contextly_sidebar id=\"TYTTamwNkcCRi0LwkE0tR5nsDwtvjg2j\"]For some public health issues, it isn’t ethical to conduct an RCT. Take sudden infant death syndrome (SIDS). Early case-control studies suggested, but didn’t prove, that babies who sleep on their stomachs are more likely to die of SIDS than babies who sleep on their backs. It wouldn’t have been ethical to randomize some babies to stomach sleeping. A public program to implement putting children to sleep on their backs proved that this measure reduced the incidence of SIDS.\u003c/p>\n\u003cp>It would be difficult, if not impossible, to do an RCT of community-wide tobacco control measures. But analyses of the results of implementing tobacco control policies, such as taxes, smoke-free laws, and advertising bans, have generated robust evidence of effectiveness that could not have been accomplished through an RCT-style study.\u003c/p>\n\u003caside class=\"pullquote alignright\">For the several thousand rare diseases, RCTs are unlikely to be conducted due to the small number of people who have them\u003c/aside>\n\u003cp>For the several thousand \u003ca href=\"https://rarediseases.info.nih.gov/diseases%5d\" target=\"_blank\" rel=\"noopener noreferrer\">rare diseases\u003c/a>, RCTs are unlikely to be conducted due to the small number of people who have them and other logistical constraints. Detailed case studies, \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0077814/\" target=\"_blank\" rel=\"noopener noreferrer\">registries\u003c/a> that collect information about specific conditions and diseases, and other study types can enhance understanding of a particular disease and its treatment to improve the health of affected patients.\u003c/p>\n\u003cp>The emerging use of \u003ca href=\"https://datascience.nih.gov/bd2k/about/what\" target=\"_blank\" rel=\"noopener noreferrer\">“big data,”\u003c/a> including information from electronic health records and expanded patient registries, presents new opportunities to conduct large-scale studies with many of the benefits of RCTs but without the expense. One such study used data from the Veterans Health Administration and Medicare to examine outcomes of treatment for type 2 diabetes. This study was many times larger, with much longer follow-up and lower cost, than previous RCTs comparing the effectiveness of different diabetes drugs. \u003ca href=\"http://www.sciencedirect.com/science/article/pii/S1098301514046385\" target=\"_blank\" rel=\"noopener noreferrer\">It clearly showed\u003c/a> that one class of drug, the thiazolidinediones, was much more effective than another class, the sulfonylureas, in reducing hospitalization and death.\u003c/p>\n\u003cp>Clinical and public health decisions are almost always made with imperfect data. There is no single, best approach to obtain better information about health interventions. Evidence grading systems, policy makers, and researchers must embrace other study types in addition to RCTs. Essential steps in interpreting findings and identifying data for action include promoting transparency in study methods, ensuring standardized data collection for key outcomes, and using new approaches to improve data synthesis.\u003c/p>\n\u003caside class=\"pullquote alignright\">Despite the global evidence base, around the world there are often claims that “there is no evidence tobacco harms health here” or that “soda isn’t proven to drive obesity in this country.” \u003c/aside>\n\u003cp>Despite the global evidence base, around the world there are often claims that “there is no evidence tobacco harms health here” or that “soda isn’t proven to drive obesity in this country.” In part, such claims can be made because some formal systems of analyzing evidence give undue weight to RCTs and inappropriately discount other types of rigorously developed evidence.\u003c/p>\n\u003cp>A valid ideal is “evidence-based practice,” which means implementing in clinical care and public policy interventions that are proven to work. But it’s also important, and perhaps more so, to develop “practice-based evidence,” — that is, to implement programs and rigorously document whether or not they work. That would both save lives and expand the evidence base of effective interventions.\u003c/p>\n\u003cp>There will always be an argument for more research and for better data. But waiting for more data is often an implicit decision not to act, or to act on the basis of past practice rather than on the best available evidence. Glorifying RCTs above other approaches, even when these other approaches may be either superior or the only practical way to get an answer, relegates patients to receiving treatments that aren’t based on the best available evidence.\u003c/p>\n\u003cp>An approach that uses all appropriate evidence types and builds on the existing evidence base using proven best practices is the one most likely to result in clinical and public health action that will save lives.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Tom Frieden, M.D., served as director of the Centers for Disease Control and Prevention from 2009 to 2017.\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Randomized controlled trials have long been held up as the “gold standard” of clinical research. There’s no doubt that well-designed trials are effective tools for testing a \u003ca href=\"https://www.statnews.com/2017/07/11/trump-fda-gottlieb-standards/\">new drug\u003c/a>, device, or other intervention. Yet much of modern medical care — perhaps most of it — is not based on randomized controlled trials and likely never will be. In this “dark matter” of clinical medicine, past practices and anecdotes all too often rule. We need to look beyond trials to improve medical care in these areas.\u003c/p>\n\u003cp>In a randomized controlled trial (RCT), participants are randomly assigned to receive either the treatment under investigation or, as a control, a placebo or the current standard treatment. The randomization process helps ensure that the various groups in the study are virtually identical in age, gender, socioeconomic status, and other variables. This minimizes the potential for bias and the influence of confounding factors.\u003c/p>\n\u003caside class=\"pullquote alignright\">'We need to look beyond trials to improve medical care in these areas.'\u003c/aside>\n\u003cp>Despite their strengths, RCTs have substantial limitations. They can be very expensive to run. They can take many years to complete, and even then may not last long enough to assess the long-term effect of an intervention such as vaccine immunity, or to detect rare or long-term adverse effects. Findings from RCTs may not be valid beyond the study population — a trial that included a high-risk population in order to maximize the possibility of detecting an effect, for example, may not be relevant to a low-risk population. RCTs may not be practical for population-wide interventions and often aren’t relevant for urgent health issues such as infectious disease outbreaks, for which public health decisions must be made quickly.\u003c/p>\n\u003cp>\u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJMra1614394\" target=\"_blank\" rel=\"noopener noreferrer\">As I write this week\u003c/a> in the \u003cem>New England Journal of Medicine\u003c/em>, several other study types can generate data that are at least as effective as RCTs, or may be even more effective, at generating evidence for action, especially related to population-wide interventions.\u003c/p>\n\u003cp>The effectiveness of the nasal spray flu vaccine (also called the live attenuated vaccine) is a dramatic illustration of the limitations of RCTs. Trials suggested that the nasal spray vaccine was superior to flu shots, at least for some populations. In subsequent years, however, \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0025839/\" target=\"_blank\" rel=\"noopener noreferrer\">observational studies\u003c/a>, including \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0025837/\" target=\"_blank\" rel=\"noopener noreferrer\">case-control studies\u003c/a>, documented that, for reasons which are still unclear, the nasal spray \u003cem>wasn’t \u003c/em>effective against the flu. That led the Advisory Committee on Immunization Practices to recommend, and the CDC to accept the recommendation, that the nasal spray flu vaccine \u003ca href=\"https://www.cdc.gov/media/releases/2016/s0622-laiv-flu.html\" target=\"_blank\" rel=\"noopener noreferrer\">not be used in the 2016-2017 flu season\u003c/a>.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>For some public health issues, it isn’t ethical to conduct an RCT. Take sudden infant death syndrome (SIDS). Early case-control studies suggested, but didn’t prove, that babies who sleep on their stomachs are more likely to die of SIDS than babies who sleep on their backs. It wouldn’t have been ethical to randomize some babies to stomach sleeping. A public program to implement putting children to sleep on their backs proved that this measure reduced the incidence of SIDS.\u003c/p>\n\u003cp>It would be difficult, if not impossible, to do an RCT of community-wide tobacco control measures. But analyses of the results of implementing tobacco control policies, such as taxes, smoke-free laws, and advertising bans, have generated robust evidence of effectiveness that could not have been accomplished through an RCT-style study.\u003c/p>\n\u003caside class=\"pullquote alignright\">For the several thousand rare diseases, RCTs are unlikely to be conducted due to the small number of people who have them\u003c/aside>\n\u003cp>For the several thousand \u003ca href=\"https://rarediseases.info.nih.gov/diseases%5d\" target=\"_blank\" rel=\"noopener noreferrer\">rare diseases\u003c/a>, RCTs are unlikely to be conducted due to the small number of people who have them and other logistical constraints. Detailed case studies, \u003ca href=\"https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0077814/\" target=\"_blank\" rel=\"noopener noreferrer\">registries\u003c/a> that collect information about specific conditions and diseases, and other study types can enhance understanding of a particular disease and its treatment to improve the health of affected patients.\u003c/p>\n\u003cp>The emerging use of \u003ca href=\"https://datascience.nih.gov/bd2k/about/what\" target=\"_blank\" rel=\"noopener noreferrer\">“big data,”\u003c/a> including information from electronic health records and expanded patient registries, presents new opportunities to conduct large-scale studies with many of the benefits of RCTs but without the expense. One such study used data from the Veterans Health Administration and Medicare to examine outcomes of treatment for type 2 diabetes. This study was many times larger, with much longer follow-up and lower cost, than previous RCTs comparing the effectiveness of different diabetes drugs. \u003ca href=\"http://www.sciencedirect.com/science/article/pii/S1098301514046385\" target=\"_blank\" rel=\"noopener noreferrer\">It clearly showed\u003c/a> that one class of drug, the thiazolidinediones, was much more effective than another class, the sulfonylureas, in reducing hospitalization and death.\u003c/p>\n\u003cp>Clinical and public health decisions are almost always made with imperfect data. There is no single, best approach to obtain better information about health interventions. Evidence grading systems, policy makers, and researchers must embrace other study types in addition to RCTs. Essential steps in interpreting findings and identifying data for action include promoting transparency in study methods, ensuring standardized data collection for key outcomes, and using new approaches to improve data synthesis.\u003c/p>\n\u003caside class=\"pullquote alignright\">Despite the global evidence base, around the world there are often claims that “there is no evidence tobacco harms health here” or that “soda isn’t proven to drive obesity in this country.” \u003c/aside>\n\u003cp>Despite the global evidence base, around the world there are often claims that “there is no evidence tobacco harms health here” or that “soda isn’t proven to drive obesity in this country.” In part, such claims can be made because some formal systems of analyzing evidence give undue weight to RCTs and inappropriately discount other types of rigorously developed evidence.\u003c/p>\n\u003cp>A valid ideal is “evidence-based practice,” which means implementing in clinical care and public policy interventions that are proven to work. But it’s also important, and perhaps more so, to develop “practice-based evidence,” — that is, to implement programs and rigorously document whether or not they work. That would both save lives and expand the evidence base of effective interventions.\u003c/p>\n\u003cp>There will always be an argument for more research and for better data. But waiting for more data is often an implicit decision not to act, or to act on the basis of past practice rather than on the best available evidence. Glorifying RCTs above other approaches, even when these other approaches may be either superior or the only practical way to get an answer, relegates patients to receiving treatments that aren’t based on the best available evidence.\u003c/p>\n\u003cp>An approach that uses all appropriate evidence types and builds on the existing evidence base using proven best practices is the one most likely to result in clinical and public health action that will save lives.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>Tom Frieden, M.D., served as director of the Centers for Disease Control and Prevention from 2009 to 2017.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Imagine feeling horribly sick, day after day, yet doctors repeatedly tell you they can't find anything wrong. That typically happens to people with the mysterious illness commonly known as chronic fatigue syndrome. Research findings from Stanford University released Monday could point the way to a long-sought diagnostic laboratory test for the condition, and possibly a first-ever treatment.\u003c/p>\n\u003cp>Believed to affect at least a million people in the U.S., the condition is now increasingly termed \u003ca href=\"https://www.cdc.gov/me-cfs/about/index.html\">myalgic encephalomyelitis/chronic fatigue syndrome\u003c/a>, or ME/CFS for short.\u003c/p>\n\u003cp>Many patients see the name \"chronic fatigue syndrome\" as trivializing and misleading, giving the impression that they're simply tired or depressed. In fact, they're experiencing profound exhaustion that isn't relieved with sleep, flu-like symptoms, muscle pain, \"brain fog\" and various other physical symptoms, all of which characteristically worsen with even minor exertion. (A 2015 Institute of Medicine \u003ca href=\"http://www.npr.org/sections/health-shots/2015/02/11/385465667/panel-says-chronic-fatigue-syndrome-is-a-disease-and-renames-it\">report\u003c/a> proposed the name \"systemic exertion intolerance disease,\" but it hasn't really stuck.)\u003c/p>\n\u003cp>The symptoms can range from mild to extremely severe, with about a quarter of patients so ill they're mostly or completely confined to bed. Now, the Stanford researchers have linked ME/CFS to variations in certain \u003ca href=\"http://www2.nau.edu/~fpm/immunology/lectures/Chapter012.pdf\">cytokines\u003c/a>, immune-signaling proteins, that track with illness severity. The \u003ca href=\"http://www.pnas.org/content/early/2017/07/25/1710519114\">study results\u003c/a> were published online Monday in the the \u003cem>Proceedings of the National Academy of Sciences\u003c/em>.\u003c/p>\n\u003cp>The link to gradation in severity, rather than simply seeking a positive versus negative result, represents a new approach to the search for biological markers for the illness. The study involved 192 ME/CFS patients and 392 healthy controls matched for age and sex. Out of 51 cytokines investigated via sophisticated \u003ca href=\"https://www.thermofisher.com/ng/en/home/life-science/protein-biology/protein-assays-analysis/luminex-multiplex-assays.html\">fluorescence-based testing\u003c/a>, only two of the cytokines differed, in their total concentrations, between the ME/CFS and control groups.\u003c/p>\n\u003caside class=\"pullquote alignright\">'This is a field that has been full of skepticism and misconception, where patients have been viewed to have invented their disease. (Our) data clearly show the contrary.'\u003ccite>Dr. Jose Montoya, professor of infectious diseases at Stanford University\u003c/cite>\u003c/aside>\n\u003cp>But, levels of 17 of the cytokines varied dramatically between the patients with mild versus severe ME/CFS symptoms. Of those 17 cytokines, 13 were types that promote inflammation. This is significant because symptoms in these patients and findings from other studies also suggest that chronic inflammation plays a major role in the illness.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"This is a field that has been full of skepticism and misconception, where patients have been viewed to have invented their disease. These data clearly show the contrary, and demonstrate what can be achieved when we couple good research design with new technology,\" lead author \u003ca href=\"https://profiles.stanford.edu/jose-montoya\">Dr. Jose Montoya\u003c/a>, professor of infectious diseases at Stanford, tells Shots.\u003c/p>\n\u003cp>According to \u003ca href=\"https://connects.catalyst.harvard.edu/Profiles/display/Person/66899\">Dr. Anthony L. Komaroff\u003c/a>, a Harvard internist and epidemiologist who has written a commentary to accompany the study, \"For many years medical scientists have speculated that the symptoms of ME/CFS might be caused by cytokines, molecules that the immune system use to wage war against foreign invaders of the body. Past studies have shown high levels of many cytokines but it was not clear that these high levels were causing symptoms.\"\u003c/p>\n\u003cp>What the latest research shows, Komaroff tells Shots, is that \"levels of many cytokines do correlate with symptoms: The higher the blood level, the worse the symptoms. That supports the theory that the cytokines are a cause of the symptoms.\"\u003c/p>\n\u003cp>So why do routine lab tests that doctors order often come back negative or not informative in ME/CFS patients? Simply put, Montoya says, those tests aren't measuring the right things.\u003c/p>\n\u003cp>Two classic laboratory measures of inflammation are sedimentation rate — the ability of red blood cells to clump together, which isn't a factor in ME/CFS — and C-reactive protein, which reflects levels of a single cytokine that wasn't one of those linked to severity in this study.\u003c/p>\n\u003cp>\"Inflammation is much more complicated than two imperfect old measures,\" Montoya says. \"We're showing an inflammation that has not been seen before.\"\u003c/p>\n\u003cp>The multidisciplinary Stanford team is now working on developing a panel that could be used commercially, that would test for around five of the 17 cytokines and would likely involve the doctor first classifying patients by severity in order to interpret the results. Such a test could both establish the diagnosis and serve to monitor patients' responses to treatment.\u003c/p>\n\u003cp>[contextly_sidebar id=\"UinsGxjPaqLdSilwu1YrkiL0onkfLKeB\"]What's more, the findings also point to possible treatment with immune-modifying or anti-inflammatory therapy. Montoya hopes that by publishing these findings \"a team of researchers somewhere in the world will see these cytokines and say they have the drug for that inflammation. We hope drug companies will pursue it.\"\u003c/p>\n\u003cp>Indeed, a major drug trial is now being conducted in Norway investigating whether the immune-modifying drug rituximab alleviates ME/CFS symptoms, after \u003ca href=\"http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0026358\">preliminary studies\u003c/a> suggested that it did in some patients. Interestingly, the drug is approved to treat certain autoimmune diseases and also non-Hodgkin lymphoma, a cancer that one study found uniquely \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3434293/\">occurs at a higher rate\u003c/a> among older people with ME/CFS.\u003c/p>\n\u003cp>Komaroff also notes a recent \u003ca href=\"LoadBlogPost.action?routingAction=LoadStory&selEditFeature=540565526\">increase in research funding\u003c/a> by the National Institutes of Health, which has included a comprehensive \u003ca href=\"http://www.npr.org/sections/health-shots/2017/05/01/526372209/nih-study-aims-to-unravel-the-illness-known-as-chronic-fatigue-syndrome\">in-house study\u003c/a> aimed at unraveling the underlying causes of the condition.\u003c/p>\n\u003cp>And in an ongoing privately funded study, Stanford geneticist \u003ca href=\"https://med.stanford.edu/profiles/ronald-davis?tab=bio\">Ron Davis\u003c/a> and a team \u003ca href=\"https://www.omf.ngo/scientific-advisory-board/\">including three Nobel laureates\u003c/a> is taking a similar \"big data\" \u003ca href=\"https://www.omf.ngo/mecfs-severely-ill-big-data-study/\">approach\u003c/a> to investigate a group of ME/CFS patients who are all severely ill, including Davis' own adult son.\u003c/p>\n\u003cp>\"There is much to learn,\" Komaroff writes, in the journal. \"Hopefully, a decade from now, \"doctors will know better what to measure and, more importantly, what to do to ease the suffering caused by this illness.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>Miriam E. Tucker is a freelance journalist specializing in medicine and health. You can follow her on Twitter @MiriamETucker.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Scientists+Edge+Closer+To+Elusive+Lab+Test+For+Chronic+Fatigue+Syndrome&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Imagine feeling horribly sick, day after day, yet doctors repeatedly tell you they can't find anything wrong. That typically happens to people with the mysterious illness commonly known as chronic fatigue syndrome. Research findings from Stanford University released Monday could point the way to a long-sought diagnostic laboratory test for the condition, and possibly a first-ever treatment.\u003c/p>\n\u003cp>Believed to affect at least a million people in the U.S., the condition is now increasingly termed \u003ca href=\"https://www.cdc.gov/me-cfs/about/index.html\">myalgic encephalomyelitis/chronic fatigue syndrome\u003c/a>, or ME/CFS for short.\u003c/p>\n\u003cp>Many patients see the name \"chronic fatigue syndrome\" as trivializing and misleading, giving the impression that they're simply tired or depressed. In fact, they're experiencing profound exhaustion that isn't relieved with sleep, flu-like symptoms, muscle pain, \"brain fog\" and various other physical symptoms, all of which characteristically worsen with even minor exertion. (A 2015 Institute of Medicine \u003ca href=\"http://www.npr.org/sections/health-shots/2015/02/11/385465667/panel-says-chronic-fatigue-syndrome-is-a-disease-and-renames-it\">report\u003c/a> proposed the name \"systemic exertion intolerance disease,\" but it hasn't really stuck.)\u003c/p>\n\u003cp>The symptoms can range from mild to extremely severe, with about a quarter of patients so ill they're mostly or completely confined to bed. Now, the Stanford researchers have linked ME/CFS to variations in certain \u003ca href=\"http://www2.nau.edu/~fpm/immunology/lectures/Chapter012.pdf\">cytokines\u003c/a>, immune-signaling proteins, that track with illness severity. The \u003ca href=\"http://www.pnas.org/content/early/2017/07/25/1710519114\">study results\u003c/a> were published online Monday in the the \u003cem>Proceedings of the National Academy of Sciences\u003c/em>.\u003c/p>\n\u003cp>The link to gradation in severity, rather than simply seeking a positive versus negative result, represents a new approach to the search for biological markers for the illness. The study involved 192 ME/CFS patients and 392 healthy controls matched for age and sex. Out of 51 cytokines investigated via sophisticated \u003ca href=\"https://www.thermofisher.com/ng/en/home/life-science/protein-biology/protein-assays-analysis/luminex-multiplex-assays.html\">fluorescence-based testing\u003c/a>, only two of the cytokines differed, in their total concentrations, between the ME/CFS and control groups.\u003c/p>\n\u003caside class=\"pullquote alignright\">'This is a field that has been full of skepticism and misconception, where patients have been viewed to have invented their disease. (Our) data clearly show the contrary.'\u003ccite>Dr. Jose Montoya, professor of infectious diseases at Stanford University\u003c/cite>\u003c/aside>\n\u003cp>But, levels of 17 of the cytokines varied dramatically between the patients with mild versus severe ME/CFS symptoms. Of those 17 cytokines, 13 were types that promote inflammation. This is significant because symptoms in these patients and findings from other studies also suggest that chronic inflammation plays a major role in the illness.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"This is a field that has been full of skepticism and misconception, where patients have been viewed to have invented their disease. These data clearly show the contrary, and demonstrate what can be achieved when we couple good research design with new technology,\" lead author \u003ca href=\"https://profiles.stanford.edu/jose-montoya\">Dr. Jose Montoya\u003c/a>, professor of infectious diseases at Stanford, tells Shots.\u003c/p>\n\u003cp>According to \u003ca href=\"https://connects.catalyst.harvard.edu/Profiles/display/Person/66899\">Dr. Anthony L. Komaroff\u003c/a>, a Harvard internist and epidemiologist who has written a commentary to accompany the study, \"For many years medical scientists have speculated that the symptoms of ME/CFS might be caused by cytokines, molecules that the immune system use to wage war against foreign invaders of the body. Past studies have shown high levels of many cytokines but it was not clear that these high levels were causing symptoms.\"\u003c/p>\n\u003cp>What the latest research shows, Komaroff tells Shots, is that \"levels of many cytokines do correlate with symptoms: The higher the blood level, the worse the symptoms. That supports the theory that the cytokines are a cause of the symptoms.\"\u003c/p>\n\u003cp>So why do routine lab tests that doctors order often come back negative or not informative in ME/CFS patients? Simply put, Montoya says, those tests aren't measuring the right things.\u003c/p>\n\u003cp>Two classic laboratory measures of inflammation are sedimentation rate — the ability of red blood cells to clump together, which isn't a factor in ME/CFS — and C-reactive protein, which reflects levels of a single cytokine that wasn't one of those linked to severity in this study.\u003c/p>\n\u003cp>\"Inflammation is much more complicated than two imperfect old measures,\" Montoya says. \"We're showing an inflammation that has not been seen before.\"\u003c/p>\n\u003cp>The multidisciplinary Stanford team is now working on developing a panel that could be used commercially, that would test for around five of the 17 cytokines and would likely involve the doctor first classifying patients by severity in order to interpret the results. Such a test could both establish the diagnosis and serve to monitor patients' responses to treatment.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>What's more, the findings also point to possible treatment with immune-modifying or anti-inflammatory therapy. Montoya hopes that by publishing these findings \"a team of researchers somewhere in the world will see these cytokines and say they have the drug for that inflammation. We hope drug companies will pursue it.\"\u003c/p>\n\u003cp>Indeed, a major drug trial is now being conducted in Norway investigating whether the immune-modifying drug rituximab alleviates ME/CFS symptoms, after \u003ca href=\"http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0026358\">preliminary studies\u003c/a> suggested that it did in some patients. Interestingly, the drug is approved to treat certain autoimmune diseases and also non-Hodgkin lymphoma, a cancer that one study found uniquely \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3434293/\">occurs at a higher rate\u003c/a> among older people with ME/CFS.\u003c/p>\n\u003cp>Komaroff also notes a recent \u003ca href=\"LoadBlogPost.action?routingAction=LoadStory&selEditFeature=540565526\">increase in research funding\u003c/a> by the National Institutes of Health, which has included a comprehensive \u003ca href=\"http://www.npr.org/sections/health-shots/2017/05/01/526372209/nih-study-aims-to-unravel-the-illness-known-as-chronic-fatigue-syndrome\">in-house study\u003c/a> aimed at unraveling the underlying causes of the condition.\u003c/p>\n\u003cp>And in an ongoing privately funded study, Stanford geneticist \u003ca href=\"https://med.stanford.edu/profiles/ronald-davis?tab=bio\">Ron Davis\u003c/a> and a team \u003ca href=\"https://www.omf.ngo/scientific-advisory-board/\">including three Nobel laureates\u003c/a> is taking a similar \"big data\" \u003ca href=\"https://www.omf.ngo/mecfs-severely-ill-big-data-study/\">approach\u003c/a> to investigate a group of ME/CFS patients who are all severely ill, including Davis' own adult son.\u003c/p>\n\u003cp>\"There is much to learn,\" Komaroff writes, in the journal. \"Hopefully, a decade from now, \"doctors will know better what to measure and, more importantly, what to do to ease the suffering caused by this illness.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>Miriam E. Tucker is a freelance journalist specializing in medicine and health. You can follow her on Twitter @MiriamETucker.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Scientists+Edge+Closer+To+Elusive+Lab+Test+For+Chronic+Fatigue+Syndrome&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Jana Gundy and Amanda Chaffin, who live within two hours of each other in Oklahoma, each have a child with the same devastating disease.\u003c/p>\n\u003cp>The genetic condition, spinal muscular atrophy, robs its sufferers of muscle strength, affecting their ability to sit, stand or even breathe.\u003c/p>\n\u003cp>So both moms were ecstatic when the Food and Drug Administration approved the first treatment for the condition two days before Christmas in 2016. It seemed the gift they had been waiting for — a chance to slow the heartbreaking decline of their young sons.\u003c/p>\n\u003cp>But that common hope has taken them down different paths: In April, Gundy's child, who is on private insurance, began getting the drug \u003ca href=\"https://www.spinraza.com/\" target=\"_blank\" rel=\"noopener noreferrer\">Spinraza\u003c/a>, which costs $750,000 for the initial year of treatment. Chaffin's child, a Medicaid enrollee, did not, as his state regulators debated whether to offer it to children like him who use ventilators to breathe.\u003c/p>\n\u003cp>Across the country, similar stories are playing out as private insurers and already-squeezed state Medicaid programs wrestle with what, if any, limits to place on patients' access to break-the-bank drugs — weighing the needs of the ill against budget realities.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>At the same time, policymakers and physicians increasingly demand to understand why drug manufacturers affix price tags that have risen to once unimaginable highs.\u003c/p>\n\u003cp>\"It looks like a drug that works for a tragic condition that afflicts children and cripples and kills them. That's the good news,\" \u003ca href=\"http://www.drugepi.org/faculty-staff-trainees/faculty/jerry-avorn/\">Dr. Jerry Avorn\u003c/a>, a professor of medicine at Harvard Medical School, says of Spinraza. But \"how in the world did the price of $750,000 a year get chosen?\"\u003c/p>\n\u003cp>Biogen, the maker of Spinraza, defends its price.\u003c/p>\n\u003cp>\"We compared industry norms for other drugs in rare disease. We looked at the efficacy and safety profile of the drug itself,\" says Dr. Wildon Farwell, an epidemiologist and senior medical director of clinical development at \u003ca href=\"https://www.biogen.com/en_us/search.html\">Biogen\u003c/a>.\u003c/p>\n\u003caside class=\"pullquote alignright\">The logic of comparing a new drug to extremely high-priced drugs already on the market only fuels an inflationary cycle.\u003c/aside>\n\u003cp>But that logic — comparing a new drug to extremely high-priced drugs already on the market — has only fueled an inflationary cycle, Avorn says, adding: \"In my view, that's akin to a kid who gets caught bullying another kid and beating him up after school, and says, 'Well, all the other kids were beating him up so it's OK.' If it's wrong, it's wrong.\"\u003c/p>\n\u003cp>The stress is unbearable for families trying to obtain treatment for sick children, who are caught in the arcane world of coverage decisions and businesses' price calculations.\u003c/p>\n\u003cp>\"The longer we wait, the more ... [his ability to move] will be gone and there's a chance of not getting it back,\" says Chaffin of Kayden, her 4-year-old son, who was diagnosed with SMA as an infant.\u003c/p>\n\u003cp>In late May, Oklahoma's Medicaid program approved rules barring coverage of Spinraza for patients dependent on ventilators.\u003c/p>\n\u003cp>[contextly_sidebar id=\"LaqAJKwQYtEl0uRFlhItRGRGbVPXKuR3\"]At that same time, Gundy watched hopefully as her 12-year-old son, Kyle, who also uses a ventilator, received the first three of the six doses he will get this year, following approval by his private health insurer. Says Gundy, \"We've seen some minor muscle movement return.\"\u003c/p>\n\u003cp>Spinraza isn't a cure for SMA, which affects 10,000 people in the U.S., but clinical tests show it holds promise for some. Scientific discoveries by researchers at the University of Massachusetts Medical School in the early 2000 — partly funded by grants from the National Institutes of Health and donations from patient-advocacy groups — helped pave the way for Spinraza.\u003c/p>\n\u003cp>The drug was granted \"orphan\" status, which provides tax credits for research and helped speed the review process. It won approval in five years after the start of clinical trials, based on results of a few small studies.\u003c/p>\n\u003cp>The FDA cited interim results from one of those studies in giving its OK; 40 percent of the patients given the drug in that study showed improvement, compared with none in the control group. Final results came later, showing 51 percent of treated children demonstrated improvement.\u003c/p>\n\u003cp>Spinraza was tested only on children, most under age 2, though it was \u003ca href=\"https://www.fda.gov/Drugs/InformationOnDrugs/ucm536955.htm\">approved\u003c/a> for pediatric and adult use.\u003c/p>\n\u003cp>All that means Biogen's research and development costs likely were not unusually high, although the company would not release figures. Five days after getting the FDA's approval to sell the drug in the U.S., Biogen announced the price: $125,000 a dose, or $750,000 for the first year. Fewer doses in following years drop the total annual cost to $375,000. The drug must be taken for life.\u003c/p>\n\u003cp>The FDA does not know or consider pricing when it grants approval.\u003c/p>\n\u003cp>If just half of U.S. patients get treatment for one year, the tab would be more than $3.7 billion. Spinraza brought in $203 million in the second quarter of this year, more than four times its revenue in the first quarter.\u003c/p>\n\u003cp>When Biogen unveiled the price tag, one Wall Street analyst at the investment bank Leerink predicted \"a storm of criticism\" and that insurers would parse \"which patients receive access.\"\u003c/p>\n\u003cp>Families that include a child with SMA are a close community, and Chaffin keeps in touch with other SMA families via Facebook, where the have-nots can watch what happens with the kids who received the drug.\u003c/p>\n\u003cp>\"There are similar kids his age that live in different states and are [on a ventilator] and they are seeing movement come back and strength coming back,\" says Chaffin. Because SMA often affects the muscles around the mouth, \"Kayden lost his smile in 2014, but he has a little smirk left. These parents are seeing their smiles coming back.\"\u003c/p>\n\u003cp>Good news came to Chaffin in late July. After receiving the required two denials from her state's Medicaid program, Kayden was accepted into Biogen's patient assistance program. The program helps patients' families navigate their insurance, covers the cost of the drug if they are denied and, in some cases, helps with other costs, too. But it isn't available to everyone. Some government programs — Medicare and Medicaid, for example — restrict efforts to eliminate copayments for drugs.\u003c/p>\n\u003cp>Kayden will get his first injection in mid-August — eight months after the drug was approved.\u003c/p>\n\u003cp>Now this low-income family faces one more hurdle: finding the estimated $2,000 per injection to cover doctor and hospital costs for the six shots Kayden will need in the coming year.\u003c/p>\n\u003cp>In addition to the financial questions, there are other unanswered concerns among families and medical professionals. Will Spinraza work in older children or adults? No children involved in the study were on ventilators at the start of the trial. Is it safe for children on ventilators? Also, because SMA's rate of decline varies, how can doctors, families or insurers measure if the drug is stalling the disease's progression? And, finally, how long will its effect last?\u003c/p>\n\u003cp>For some fast-track drugs like Spinraza, FDA approvals don't offer this kind of guidance.\u003c/p>\n\u003cp>\u003ca href=\"http://www.seattlechildrens.org/medical-staff/susan-d-apkon/\">Dr. Susan Apkon\u003c/a>, who treats dozens of children with SMA as a physiatrist at Seattle Children's Hospital — and who urged Washington state's Medicaid pharmacy board to cover the drug — says there is no easy answer.\u003c/p>\n\u003cp>\"If a drug works, we want to give it to the child or adult, whatever the drug is,\" says Apkon, who does not receive money directly from Biogen but is a co-investigator in one of the company's ongoing studies.\u003c/p>\n\u003cp>Still, \"there is one pot of money, and we need to figure out how it gets distributed,\" she says. \"The system is broken.\"\u003c/p>\n\u003caside class=\"pullquote alignright\">With any costly new drug, it all comes down to “tough choices.”\u003ccite>Jack Hoadley, health policy analyst at Georgetown University’s Health Policy Institute.\u003c/cite>\u003c/aside>\n\u003cp>With any costly new drug, it all comes down to \"tough choices,\" says \u003ca href=\"http://explore.georgetown.edu/people/jfh7/\">Jack Hoadley\u003c/a>, a health policy analyst at Georgetown University's Health Policy Institute.\u003c/p>\n\u003cp>\"Treating one of these patients may mean not treating 1,000 patients with some other, less expensive problem — or saying they have to raise more tax dollars,\" he says. \"Private insurers have the same trade-off. Do we pay for this if it will ultimately raise our premiums?\"\u003c/p>\n\u003cp>Coverage eligibility varies by insurer and, in Medicaid, by state.\u003c/p>\n\u003cp>Most insurers and Medicaid programs require that patients show some kind of proof of progress — or at least maintenance of function — in order to continue therapy beyond initial doses.\u003c/p>\n\u003cp>While agreeing that the drug offers some hope to patients, Donna Sullivan, chief pharmacy officer for \u003ca href=\"https://www.hca.wa.gov/\">Washington State Health Care Authority\u003c/a>, which oversees Medicaid, says the price tag rankles her.\u003c/p>\n\u003cp>During a recent meeting with Biogen officials, Sullivan was blunt: \"I told them the price was unethical.\"\u003c/p>\n\u003cp>In her state, there are about 150 children with SMA. After reviewing the data on Spinraza, Washington Medicaid approved broad coverage rules, including allowing patients on ventilators to get the drug.\u003c/p>\n\u003cp>But large new spending puts additional pressure on state budgets. When combined with economic downturns, that can lead lawmakers to trim medical provider payments or optional Medicaid services, which include adult dental care, podiatry, chiropractic treatment and other services.\u003c/p>\n\u003cp>Crystal Ramos, of Pasco, Wash., whose 3-year-old twins have SMA, is thankful that Medicaid covers the drug. After four doses, she says she is already seeing some improvement in her boys.\u003c/p>\n\u003cp>The boys are on her insurance through her job as a teacher, but Medicaid picks up what her private insurance does not, which totals about $2,500 per injection.\u003c/p>\n\u003cp>She calls Spinraza's price \"beyond crazy.\"\u003c/p>\n\u003cp>\"They're putting a price tag on life, which sucks,\" she says. \"In the end, we have to pay it if we want our kids to live, and they know it.\"\u003c/p>\n\u003chr>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003ca href=\"http://khn.org/\">\u003cem>Kaiser Health News\u003c/em>\u003c/a>\u003cem> is a nonprofit health newsroom, an editorially independent part of the Kaiser Family Foundation. You can follow KHN senior correspondent Julie Appleby on Twitter \u003c/em>\u003ca href=\"http://twitter.com/Julie_Appleby\">\u003cem>\u003cstrong>@Julie_Appleby\u003c/strong>\u003c/em>\u003c/a>\u003cem>.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 Kaiser Health News. To see more, visit \u003ca href=\"http://www.kaiserhealthnews.org/\">Kaiser Health News\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Drug+Puts+A+%24750%2C000+%27Price+Tag+On+Life%27&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Jana Gundy and Amanda Chaffin, who live within two hours of each other in Oklahoma, each have a child with the same devastating disease.\u003c/p>\n\u003cp>The genetic condition, spinal muscular atrophy, robs its sufferers of muscle strength, affecting their ability to sit, stand or even breathe.\u003c/p>\n\u003cp>So both moms were ecstatic when the Food and Drug Administration approved the first treatment for the condition two days before Christmas in 2016. It seemed the gift they had been waiting for — a chance to slow the heartbreaking decline of their young sons.\u003c/p>\n\u003cp>But that common hope has taken them down different paths: In April, Gundy's child, who is on private insurance, began getting the drug \u003ca href=\"https://www.spinraza.com/\" target=\"_blank\" rel=\"noopener noreferrer\">Spinraza\u003c/a>, which costs $750,000 for the initial year of treatment. Chaffin's child, a Medicaid enrollee, did not, as his state regulators debated whether to offer it to children like him who use ventilators to breathe.\u003c/p>\n\u003cp>Across the country, similar stories are playing out as private insurers and already-squeezed state Medicaid programs wrestle with what, if any, limits to place on patients' access to break-the-bank drugs — weighing the needs of the ill against budget realities.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>At the same time, policymakers and physicians increasingly demand to understand why drug manufacturers affix price tags that have risen to once unimaginable highs.\u003c/p>\n\u003cp>\"It looks like a drug that works for a tragic condition that afflicts children and cripples and kills them. That's the good news,\" \u003ca href=\"http://www.drugepi.org/faculty-staff-trainees/faculty/jerry-avorn/\">Dr. Jerry Avorn\u003c/a>, a professor of medicine at Harvard Medical School, says of Spinraza. But \"how in the world did the price of $750,000 a year get chosen?\"\u003c/p>\n\u003cp>Biogen, the maker of Spinraza, defends its price.\u003c/p>\n\u003cp>\"We compared industry norms for other drugs in rare disease. We looked at the efficacy and safety profile of the drug itself,\" says Dr. Wildon Farwell, an epidemiologist and senior medical director of clinical development at \u003ca href=\"https://www.biogen.com/en_us/search.html\">Biogen\u003c/a>.\u003c/p>\n\u003caside class=\"pullquote alignright\">The logic of comparing a new drug to extremely high-priced drugs already on the market only fuels an inflationary cycle.\u003c/aside>\n\u003cp>But that logic — comparing a new drug to extremely high-priced drugs already on the market — has only fueled an inflationary cycle, Avorn says, adding: \"In my view, that's akin to a kid who gets caught bullying another kid and beating him up after school, and says, 'Well, all the other kids were beating him up so it's OK.' If it's wrong, it's wrong.\"\u003c/p>\n\u003cp>The stress is unbearable for families trying to obtain treatment for sick children, who are caught in the arcane world of coverage decisions and businesses' price calculations.\u003c/p>\n\u003cp>\"The longer we wait, the more ... [his ability to move] will be gone and there's a chance of not getting it back,\" says Chaffin of Kayden, her 4-year-old son, who was diagnosed with SMA as an infant.\u003c/p>\n\u003cp>In late May, Oklahoma's Medicaid program approved rules barring coverage of Spinraza for patients dependent on ventilators.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>At that same time, Gundy watched hopefully as her 12-year-old son, Kyle, who also uses a ventilator, received the first three of the six doses he will get this year, following approval by his private health insurer. Says Gundy, \"We've seen some minor muscle movement return.\"\u003c/p>\n\u003cp>Spinraza isn't a cure for SMA, which affects 10,000 people in the U.S., but clinical tests show it holds promise for some. Scientific discoveries by researchers at the University of Massachusetts Medical School in the early 2000 — partly funded by grants from the National Institutes of Health and donations from patient-advocacy groups — helped pave the way for Spinraza.\u003c/p>\n\u003cp>The drug was granted \"orphan\" status, which provides tax credits for research and helped speed the review process. It won approval in five years after the start of clinical trials, based on results of a few small studies.\u003c/p>\n\u003cp>The FDA cited interim results from one of those studies in giving its OK; 40 percent of the patients given the drug in that study showed improvement, compared with none in the control group. Final results came later, showing 51 percent of treated children demonstrated improvement.\u003c/p>\n\u003cp>Spinraza was tested only on children, most under age 2, though it was \u003ca href=\"https://www.fda.gov/Drugs/InformationOnDrugs/ucm536955.htm\">approved\u003c/a> for pediatric and adult use.\u003c/p>\n\u003cp>All that means Biogen's research and development costs likely were not unusually high, although the company would not release figures. Five days after getting the FDA's approval to sell the drug in the U.S., Biogen announced the price: $125,000 a dose, or $750,000 for the first year. Fewer doses in following years drop the total annual cost to $375,000. The drug must be taken for life.\u003c/p>\n\u003cp>The FDA does not know or consider pricing when it grants approval.\u003c/p>\n\u003cp>If just half of U.S. patients get treatment for one year, the tab would be more than $3.7 billion. Spinraza brought in $203 million in the second quarter of this year, more than four times its revenue in the first quarter.\u003c/p>\n\u003cp>When Biogen unveiled the price tag, one Wall Street analyst at the investment bank Leerink predicted \"a storm of criticism\" and that insurers would parse \"which patients receive access.\"\u003c/p>\n\u003cp>Families that include a child with SMA are a close community, and Chaffin keeps in touch with other SMA families via Facebook, where the have-nots can watch what happens with the kids who received the drug.\u003c/p>\n\u003cp>\"There are similar kids his age that live in different states and are [on a ventilator] and they are seeing movement come back and strength coming back,\" says Chaffin. Because SMA often affects the muscles around the mouth, \"Kayden lost his smile in 2014, but he has a little smirk left. These parents are seeing their smiles coming back.\"\u003c/p>\n\u003cp>Good news came to Chaffin in late July. After receiving the required two denials from her state's Medicaid program, Kayden was accepted into Biogen's patient assistance program. The program helps patients' families navigate their insurance, covers the cost of the drug if they are denied and, in some cases, helps with other costs, too. But it isn't available to everyone. Some government programs — Medicare and Medicaid, for example — restrict efforts to eliminate copayments for drugs.\u003c/p>\n\u003cp>Kayden will get his first injection in mid-August — eight months after the drug was approved.\u003c/p>\n\u003cp>Now this low-income family faces one more hurdle: finding the estimated $2,000 per injection to cover doctor and hospital costs for the six shots Kayden will need in the coming year.\u003c/p>\n\u003cp>In addition to the financial questions, there are other unanswered concerns among families and medical professionals. Will Spinraza work in older children or adults? No children involved in the study were on ventilators at the start of the trial. Is it safe for children on ventilators? Also, because SMA's rate of decline varies, how can doctors, families or insurers measure if the drug is stalling the disease's progression? And, finally, how long will its effect last?\u003c/p>\n\u003cp>For some fast-track drugs like Spinraza, FDA approvals don't offer this kind of guidance.\u003c/p>\n\u003cp>\u003ca href=\"http://www.seattlechildrens.org/medical-staff/susan-d-apkon/\">Dr. Susan Apkon\u003c/a>, who treats dozens of children with SMA as a physiatrist at Seattle Children's Hospital — and who urged Washington state's Medicaid pharmacy board to cover the drug — says there is no easy answer.\u003c/p>\n\u003cp>\"If a drug works, we want to give it to the child or adult, whatever the drug is,\" says Apkon, who does not receive money directly from Biogen but is a co-investigator in one of the company's ongoing studies.\u003c/p>\n\u003cp>Still, \"there is one pot of money, and we need to figure out how it gets distributed,\" she says. \"The system is broken.\"\u003c/p>\n\u003caside class=\"pullquote alignright\">With any costly new drug, it all comes down to “tough choices.”\u003ccite>Jack Hoadley, health policy analyst at Georgetown University’s Health Policy Institute.\u003c/cite>\u003c/aside>\n\u003cp>With any costly new drug, it all comes down to \"tough choices,\" says \u003ca href=\"http://explore.georgetown.edu/people/jfh7/\">Jack Hoadley\u003c/a>, a health policy analyst at Georgetown University's Health Policy Institute.\u003c/p>\n\u003cp>\"Treating one of these patients may mean not treating 1,000 patients with some other, less expensive problem — or saying they have to raise more tax dollars,\" he says. \"Private insurers have the same trade-off. Do we pay for this if it will ultimately raise our premiums?\"\u003c/p>\n\u003cp>Coverage eligibility varies by insurer and, in Medicaid, by state.\u003c/p>\n\u003cp>Most insurers and Medicaid programs require that patients show some kind of proof of progress — or at least maintenance of function — in order to continue therapy beyond initial doses.\u003c/p>\n\u003cp>While agreeing that the drug offers some hope to patients, Donna Sullivan, chief pharmacy officer for \u003ca href=\"https://www.hca.wa.gov/\">Washington State Health Care Authority\u003c/a>, which oversees Medicaid, says the price tag rankles her.\u003c/p>\n\u003cp>During a recent meeting with Biogen officials, Sullivan was blunt: \"I told them the price was unethical.\"\u003c/p>\n\u003cp>In her state, there are about 150 children with SMA. After reviewing the data on Spinraza, Washington Medicaid approved broad coverage rules, including allowing patients on ventilators to get the drug.\u003c/p>\n\u003cp>But large new spending puts additional pressure on state budgets. When combined with economic downturns, that can lead lawmakers to trim medical provider payments or optional Medicaid services, which include adult dental care, podiatry, chiropractic treatment and other services.\u003c/p>\n\u003cp>Crystal Ramos, of Pasco, Wash., whose 3-year-old twins have SMA, is thankful that Medicaid covers the drug. After four doses, she says she is already seeing some improvement in her boys.\u003c/p>\n\u003cp>The boys are on her insurance through her job as a teacher, but Medicaid picks up what her private insurance does not, which totals about $2,500 per injection.\u003c/p>\n\u003cp>She calls Spinraza's price \"beyond crazy.\"\u003c/p>\n\u003cp>\"They're putting a price tag on life, which sucks,\" she says. \"In the end, we have to pay it if we want our kids to live, and they know it.\"\u003c/p>\n\u003chr>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003ca href=\"http://khn.org/\">\u003cem>Kaiser Health News\u003c/em>\u003c/a>\u003cem> is a nonprofit health newsroom, an editorially independent part of the Kaiser Family Foundation. You can follow KHN senior correspondent Julie Appleby on Twitter \u003c/em>\u003ca href=\"http://twitter.com/Julie_Appleby\">\u003cem>\u003cstrong>@Julie_Appleby\u003c/strong>\u003c/em>\u003c/a>\u003cem>.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 Kaiser Health News. To see more, visit \u003ca href=\"http://www.kaiserhealthnews.org/\">Kaiser Health News\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Drug+Puts+A+%24750%2C000+%27Price+Tag+On+Life%27&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"title": "Scientists Precisely Edit DNA in Human Embryos to Fix a Disease Gene",
"headTitle": "KQED Future of You | KQED Science",
"content": "\u003cp>Scientists have been tinkering with the DNA in humans and other living things for decades. But one thing has long been considered off-limits: modifying human DNA in any way that could be passed down for generations.\u003c/p>\n\u003cp>Now, an international team of scientists \u003ca href=\"http://nature.com/articles/doi:10.1038/nature23305\">reports\u003c/a> they have, for the first time, figured out a way to successfully edit the DNA in human embryos — without introducing the harmful mutations that were a problem in previous attempts elsewhere. The work was published online Wednesday in the journal \u003cem>Nature.\u003c/em>\u003c/p>\n\u003cp>\"It's a pretty exciting piece of science,\" says \u003ca href=\"https://daley.med.harvard.edu/\">George Daley\u003c/a>, dean of the Harvard Medical School, who was not involved in the research. \"It's a technical tour de force. It's really remarkable.\"\u003c/p>\n\u003cp>[contextly_sidebar id=\"7SHcMEHgm6xBjgR2ZgdXf4oHbyU10mYY\"]The research is ultimately aimed at helping families plagued by genetic diseases. The new experiment used a powerful new gene-editing technique to correct a genetic defect behind a heart disorder that can cause seemingly healthy young people to suddenly die from heart failure.\u003c/p>\n\u003cp>The experiment corrected the defect in nearly two-thirds of several dozen embryos, without causing potentially dangerous mutations elsewhere in the DNA.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>None of the embryos were used to try to create a baby. But if future experiments confirm the techniques are safe and effective, the scientists say the same approach could be used to prevent a long list of inheritable diseases.\u003c/p>\n\u003cp>\"Potentially, we're talking about thousands of genes and thousands of patients,\" says \u003ca href=\"https://www.ohsu.edu/providers/paula-amato/42A6A8A8BA74496A98855052CA32BFAD\">Paula Amato\u003c/a>, an associate professor of obstetrics and gynecology at Oregon Health & Science University in Portland. She was a member of the scientific team from the U.S., China and South Korea.\u003c/p>\n\u003cp>Other diseases that might ultimately benefit from such an approach include \u003ca href=\"https://medlineplus.gov/huntingtonsdisease.html\">Huntington's disease\u003c/a>, \u003ca href=\"https://ghr.nlm.nih.gov/condition/cystic-fibrosis\">cystic fibrosis\u003c/a>, perhaps an inherited form of \u003ca href=\"https://medlineplus.gov/alzheimersdisease.html\">Alzheimer's disease\u003c/a> and cases of breast and ovarian cancer caused by mutations in the \u003ca href=\"https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet\">BRCA genes\u003c/a>.\u003c/p>\n\u003cp>Nonetheless, the work is setting off alarm bells among critics around the world.\u003c/p>\n\u003cfigure id=\"attachment_434299\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-434299\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-800x599.jpg\" alt=\"\" width=\"800\" height=\"599\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-800x599.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-768x575.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-1020x764.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-1180x884.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-960x719.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-240x180.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-375x281.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-520x389.jpg 520w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29.jpg 1773w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Shoukhrat Mitalipov, principal investigator for the embryo editing study, directs the Center for Embryonic Cell and Gene Therapy at Oregon Health \u003ccite>(Courtesy of Kristyna Wentz-Graff/OHSU)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"I think it's extraordinarily disturbing,\" says \u003ca href=\"https://www.geneticsandsociety.org/article/marcy-darnovsky\">Marcy Darnovsky\u003c/a>, who directs the Center for Genetics and Society, a genetics watchdog group in Berkeley, Calif. \"It's a flagrant disregard of calls for a broad societal consensus in decisions about a really momentous technology that could be used good, but in this case is being used in preparation for an extraordinarily risky application.\"\u003c/p>\n\u003cp>\"If irresponsible scientists are not stopped, the world may soon be presented with a fait accompli of the first [genetically modified] baby,\" says \u003ca href=\"http://www.hgalert.org/topics/hge/threat.htm\">David King\u003c/a>, who heads the U.K-based group Human Genetics Alert. \"We call on governments and international organizations to wake up and pass an immediate global ban on creating cloned or GM babies, before it is too late.\"\u003c/p>\n\u003cp>Amato and others stress that their work is aimed at preventing terrible diseases, not creating genetically enhanced people. And they note that much more research is needed to confirm the technique is safe and effective before anyone tries to make a baby this way.\u003c/p>\n\u003cp>But scientists hoping to continue the work in the U.S. face many regulatory obstacles. The National Institutes of Health will not fund any research involving human embryos (the new work was funded by Oregon Health & Science University). And the Food and Drug Administration is prohibited by Congress from considering any experiments that involve genetically modified human embryos.\u003c/p>\n\u003caside class=\"pullquote alignright\">'This is a strong statement that we can do genome editing. The question that remains is: \u003cem>Should we?\u003c/em>'\u003ccite>George Daley, dean of the Harvard Medical School\u003c/cite>\u003c/aside>\n\u003cp>Nevertheless, the researchers say they're hopeful about continuing the work, perhaps in Britain. The United Kingdom has \u003ca href=\"http://www.npr.org/2016/02/01/465180953/british-scientists-gain-approval-to-edit-dna-in-human-embryos\">permitted\u003c/a> \u003ca href=\"http://www.npr.org/2015/02/03/383578221/u-k-lawmakers-allow-scientists-to-attempt-dna-transplants\">genetic experiments \u003c/a>involving human embryos forbidden in the United States.\u003c/p>\n\u003cp>\"If other countries would be interested, we would be happy to work with their regulatory bodies,\" says \u003ca href=\"http://www.ohsu.edu/xd/research/centers-institutes/embryonic-cell-gene-therapy-center/people.cfm\">Shoukhrat Mitalipov\u003c/a>, director of the Oregon Health & Science University's Center for Embryonic Cell and Gene Therapy.\u003c/p>\n\u003cp>One major concern is safety to a developing embryo — whether genetically modified human embryos would indeed produce healthy babies. But on a broader level, any changes made in the DNA of an embryo would be passed down for generations. That raises fears that any mistakes in the editing that inadvertently caused new diseases could become a permanent part of that family's genetic blueprint.\u003c/p>\n\u003cp>Darnovsky and others also worry that modifying human DNA in an embryo could give rise to \"designer babies.\" That's when parents pick and choose the traits of their children to try to make them smarter, taller, stronger or have other traits that make them seem superior. That's not yet technically possible. But critics fear scientists are already moving in that direction.\u003c/p>\n\u003cp>\"The scenario is that you would have fertility clinics advertising to people who wanted to engineer their future children so that they could be presented as 'enhanced' — as biologically better than everyone else,\" Darnovsky says. \"It's not a world we want to build. It's not a world we want to live in.\"\u003c/p>\n\u003cp>Unscrupulous researchers could also rush the technology into fertility clinics to try to start creating babies they can bill as genetically enhanced before the technology has even been proved safe, and before a societal consensus has been reached about what applications should be permitted.\u003c/p>\n\u003cp>\"This is a strong statement that we can do genome editing,\" says Harvard's Daley. \"The question that remains is: 'Should we?' We need a deeper public discourse around the ethical implications of this technology.\"\u003c/p>\n\u003cp>Darnovsky and some scientists argue that many couples who carry genetic diseases already have safer alternatives to this sort of gene editing. Couples carrying genetic diseases can go through in vitro fertilization (\u003ca href=\"http://www.sart.org/SART_Success_Rates/\">IVF\u003c/a>) and have their embryos tested before being implanted in the womb.\u003c/p>\n\u003cp>\"I will admit to experiencing a sense of puzzlement,\" says \u003ca href=\"http://www.altius.org/#organization\">Fyodor Urnov\u003c/a>, an associate director at the Altius Institute for Biomedical Sciences, a nonprofit research institute in Seattle.\u003c/p>\n\u003cp>\"The question I have is: 'Why did you folks bother, given that there is a safe, effective, approved and ethical way to attain exactly the goal you have set out to do without any of the significant logical and ethic hurdles of having to edit a human embryo?\" Urnov says.\u003c/p>\n\u003cp>Amato and the other scientists on the international team say their approach could offer an alternative for couples for whom those standard options won't work or are less desirable. But they agree the work should only move forward with careful regulatory oversight to prevent abuse.\u003c/p>\n\u003cp>\"Anytime there's a new technology there's a potential for misuse. We have to acknowledge that,\" Amato says. \"Personally I don't feel that's a reason not to pursue the research if you think there's a potential benefit that outweighs that risk. And I think if you can prevent serious disease in future generations, that makes it worthwhile to pursue this.\"\u003c/p>\n\u003cp>The advance was first \u003ca href=\"https://www.technologyreview.com/s/608350/first-human-embryos-edited-in-us/\">reported\u003c/a> last week in \u003cem>Technology Review\u003c/em>, a magazine published by the Massachusetts Institute of Technology. But the details were withheld and the researchers did not elaborate until the scientific paper had finished being vetted by other scientists for publication in \u003cem>Nature.\u003c/em>\u003c/p>\n\u003cp>For their experiments, the scientists obtained sperm from a donor carrying a mutation for the heart disorder \u003ca href=\"http://www.heart.org/HEARTORG/Conditions/More/Cardiomyopathy/What-Is-Cardiomyopathy-in-Adults_UCM_444168_Article.jsp#.WYESnoTyvIU\">cardiomyopathy\u003c/a>. They then used that sperm to fertilize dozens of eggs obtained from healthy women.\u003c/p>\n\u003cp>At the same time as fertilization, the researchers injected a powerful, microscopic gene-editing tool known as \u003ca href=\"http://www.npr.org/tags/419142387/crispr\">CRISPR-Cas9\u003c/a>. The new technique makes it much easier than previous approaches to make very precise changes in DNA.\u003c/p>\n\u003cp>Several scientists likened the approach to doing surgery on fetuses when they are in the womb. But this takes that idea much further and involves repairing damaged DNA at a molecular level in the womb.\u003c/p>\n\u003cp>\"This is nano-surgery,\" says \u003ca href=\"http://arep.med.harvard.edu/gmc/\">George Church\u003c/a>, a prominent Harvard geneticist who also was not involved in the research. \"You're doing it with the finest possible scalpel.\"\u003c/p>\n\u003cp>The editing tool very accurately cut into a mutated gene known as MYBPC3, which causes cardiomyopathy. To the researchers' surprise, the cut triggered the embryos to repair the defective gene on their own. This is a process that had previously been unknown, the scientists say.\u003c/p>\n\u003cp>\"The most exciting moment was when we realized the mechanism of repair,\" Amato says. \"It was fixing itself.\"\u003c/p>\n\u003cp>The researchers then let the embryos develop for several days so they could analyze them to see how well the experiments worked. In one part of the experiments involving 58 embryos, the approach corrected the mutation in more than 70 percent of the embryos, the researchers reported.\u003c/p>\n\u003cp>\"The gene defect was corrected with high efficiency,\" Amato says.\u003c/p>\n\u003cp>In addition, a detailed genetic analysis of the embryos concluded that the gene editing had not caused safety problems.\u003c/p>\n\u003cp>\"I think this is a significant advance,\" Church says. \"This is important.\"\u003c/p>\n\u003cp>In 2015, Chinese scientists \u003ca href=\"http://www.npr.org/sections/health-shots/2015/04/23/401655818/critics-lash-out-at-chinese-scientists-who-edited-dna-in-human-embryos\">reported\u003c/a> trying to edit the DNA of embryos for the first time, also using CRISPR-Cas9. But that experiment involved embryos that could never develop normally. And while those researchers did succeed in editing the targeted defect, it also produced unintended defects elsewhere in the embryos' DNA.\u003c/p>\n\u003cp>The scientists who conducted the new experiments say they think they avoided those problems by injecting CRISPR at the same time the eggs were being fertilized by sperm.\u003c/p>\n\u003cp>\"That was key,\" Mitalipov says.\u003c/p>\n\u003cp>\u003ca href=\"https://law.wisc.edu/profiles/racharo@wisc.edu\">Alta Charo\u003c/a>, a bioethicist at the University of Wisconsin, dismissed concerns about the work leading to designer babies.\u003c/p>\n\u003cp>\"This is not the dawn of the era of the designer baby,\" says Charo, who co-chaired a committee formed by the National Academies of Sciences and the National Academy of Medicine to determine whether such experiments should be permissible. The committee \u003ca href=\"http://www.npr.org/sections/health-shots/2017/02/14/514580162/scientific-panel-says-editing-heritable-human-genes-could-be-ok-in-the-future\">concluded\u003c/a> earlier this year that gene editing of human embryos could be allowed in rare cases when no other options are available — but only to treat diseases.\u003c/p>\n\u003cp>\"I do not think that the constant drumbeat about the fear of designer baby is warranted, Charo says. \"What this is, is a possible step toward being able to edit the DNA in human embryos that's reliable and precise.\"\u003c/p>\n\u003cp>In the meantime, scientists in Britain have won \u003ca href=\"http://www.npr.org/2016/02/01/465180953/british-scientists-gain-approval-to-edit-dna-in-human-embryos\">approval \u003c/a>to use CRISPR to edit the DNA in healthy human embryos to learn more about normal human development. A \u003ca href=\"http://www.npr.org/about-npr/494863809/npr-exclusive-report-stockholm-lab-first-to-try-to-edit-dna-of-healthy-human-emb\">team in Sweden\u003c/a> has started similar experiments.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\"I think this needs to be tightly regulated,\" says \u003ca href=\"http://ki.se/en/people/frelan\">Fredrik Lanner\u003c/a>, a geneticist at the Karolinska Institute in Stockholm who is conducting those experiments. \"This is very exciting. But it also could be a double-edged sword. So I think we really have to be extra cautious with this technology.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Scientists+Precisely+Edit+DNA+In+Human+Embryos+To+Fix+A+Disease+Gene&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"excerpt": "In experimental embryos, scientists were able to repair the gene that causes a serious heart disorder. More research is needed to confirm the method would produce healthy babies, they say.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Scientists have been tinkering with the DNA in humans and other living things for decades. But one thing has long been considered off-limits: modifying human DNA in any way that could be passed down for generations.\u003c/p>\n\u003cp>Now, an international team of scientists \u003ca href=\"http://nature.com/articles/doi:10.1038/nature23305\">reports\u003c/a> they have, for the first time, figured out a way to successfully edit the DNA in human embryos — without introducing the harmful mutations that were a problem in previous attempts elsewhere. The work was published online Wednesday in the journal \u003cem>Nature.\u003c/em>\u003c/p>\n\u003cp>\"It's a pretty exciting piece of science,\" says \u003ca href=\"https://daley.med.harvard.edu/\">George Daley\u003c/a>, dean of the Harvard Medical School, who was not involved in the research. \"It's a technical tour de force. It's really remarkable.\"\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>The research is ultimately aimed at helping families plagued by genetic diseases. The new experiment used a powerful new gene-editing technique to correct a genetic defect behind a heart disorder that can cause seemingly healthy young people to suddenly die from heart failure.\u003c/p>\n\u003cp>The experiment corrected the defect in nearly two-thirds of several dozen embryos, without causing potentially dangerous mutations elsewhere in the DNA.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>None of the embryos were used to try to create a baby. But if future experiments confirm the techniques are safe and effective, the scientists say the same approach could be used to prevent a long list of inheritable diseases.\u003c/p>\n\u003cp>\"Potentially, we're talking about thousands of genes and thousands of patients,\" says \u003ca href=\"https://www.ohsu.edu/providers/paula-amato/42A6A8A8BA74496A98855052CA32BFAD\">Paula Amato\u003c/a>, an associate professor of obstetrics and gynecology at Oregon Health & Science University in Portland. She was a member of the scientific team from the U.S., China and South Korea.\u003c/p>\n\u003cp>Other diseases that might ultimately benefit from such an approach include \u003ca href=\"https://medlineplus.gov/huntingtonsdisease.html\">Huntington's disease\u003c/a>, \u003ca href=\"https://ghr.nlm.nih.gov/condition/cystic-fibrosis\">cystic fibrosis\u003c/a>, perhaps an inherited form of \u003ca href=\"https://medlineplus.gov/alzheimersdisease.html\">Alzheimer's disease\u003c/a> and cases of breast and ovarian cancer caused by mutations in the \u003ca href=\"https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet\">BRCA genes\u003c/a>.\u003c/p>\n\u003cp>Nonetheless, the work is setting off alarm bells among critics around the world.\u003c/p>\n\u003cfigure id=\"attachment_434299\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-434299\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-800x599.jpg\" alt=\"\" width=\"800\" height=\"599\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-800x599.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-160x120.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-768x575.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-1020x764.jpg 1020w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-1180x884.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-960x719.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-240x180.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-375x281.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29-520x389.jpg 520w, https://ww2.kqed.org/app/uploads/sites/13/2017/08/mitalia-1_custom-57c3c6b2b7ed2aac34d5c34fba0ea89317aa2d29.jpg 1773w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Shoukhrat Mitalipov, principal investigator for the embryo editing study, directs the Center for Embryonic Cell and Gene Therapy at Oregon Health \u003ccite>(Courtesy of Kristyna Wentz-Graff/OHSU)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\"I think it's extraordinarily disturbing,\" says \u003ca href=\"https://www.geneticsandsociety.org/article/marcy-darnovsky\">Marcy Darnovsky\u003c/a>, who directs the Center for Genetics and Society, a genetics watchdog group in Berkeley, Calif. \"It's a flagrant disregard of calls for a broad societal consensus in decisions about a really momentous technology that could be used good, but in this case is being used in preparation for an extraordinarily risky application.\"\u003c/p>\n\u003cp>\"If irresponsible scientists are not stopped, the world may soon be presented with a fait accompli of the first [genetically modified] baby,\" says \u003ca href=\"http://www.hgalert.org/topics/hge/threat.htm\">David King\u003c/a>, who heads the U.K-based group Human Genetics Alert. \"We call on governments and international organizations to wake up and pass an immediate global ban on creating cloned or GM babies, before it is too late.\"\u003c/p>\n\u003cp>Amato and others stress that their work is aimed at preventing terrible diseases, not creating genetically enhanced people. And they note that much more research is needed to confirm the technique is safe and effective before anyone tries to make a baby this way.\u003c/p>\n\u003cp>But scientists hoping to continue the work in the U.S. face many regulatory obstacles. The National Institutes of Health will not fund any research involving human embryos (the new work was funded by Oregon Health & Science University). And the Food and Drug Administration is prohibited by Congress from considering any experiments that involve genetically modified human embryos.\u003c/p>\n\u003caside class=\"pullquote alignright\">'This is a strong statement that we can do genome editing. The question that remains is: \u003cem>Should we?\u003c/em>'\u003ccite>George Daley, dean of the Harvard Medical School\u003c/cite>\u003c/aside>\n\u003cp>Nevertheless, the researchers say they're hopeful about continuing the work, perhaps in Britain. The United Kingdom has \u003ca href=\"http://www.npr.org/2016/02/01/465180953/british-scientists-gain-approval-to-edit-dna-in-human-embryos\">permitted\u003c/a> \u003ca href=\"http://www.npr.org/2015/02/03/383578221/u-k-lawmakers-allow-scientists-to-attempt-dna-transplants\">genetic experiments \u003c/a>involving human embryos forbidden in the United States.\u003c/p>\n\u003cp>\"If other countries would be interested, we would be happy to work with their regulatory bodies,\" says \u003ca href=\"http://www.ohsu.edu/xd/research/centers-institutes/embryonic-cell-gene-therapy-center/people.cfm\">Shoukhrat Mitalipov\u003c/a>, director of the Oregon Health & Science University's Center for Embryonic Cell and Gene Therapy.\u003c/p>\n\u003cp>One major concern is safety to a developing embryo — whether genetically modified human embryos would indeed produce healthy babies. But on a broader level, any changes made in the DNA of an embryo would be passed down for generations. That raises fears that any mistakes in the editing that inadvertently caused new diseases could become a permanent part of that family's genetic blueprint.\u003c/p>\n\u003cp>Darnovsky and others also worry that modifying human DNA in an embryo could give rise to \"designer babies.\" That's when parents pick and choose the traits of their children to try to make them smarter, taller, stronger or have other traits that make them seem superior. That's not yet technically possible. But critics fear scientists are already moving in that direction.\u003c/p>\n\u003cp>\"The scenario is that you would have fertility clinics advertising to people who wanted to engineer their future children so that they could be presented as 'enhanced' — as biologically better than everyone else,\" Darnovsky says. \"It's not a world we want to build. It's not a world we want to live in.\"\u003c/p>\n\u003cp>Unscrupulous researchers could also rush the technology into fertility clinics to try to start creating babies they can bill as genetically enhanced before the technology has even been proved safe, and before a societal consensus has been reached about what applications should be permitted.\u003c/p>\n\u003cp>\"This is a strong statement that we can do genome editing,\" says Harvard's Daley. \"The question that remains is: 'Should we?' We need a deeper public discourse around the ethical implications of this technology.\"\u003c/p>\n\u003cp>Darnovsky and some scientists argue that many couples who carry genetic diseases already have safer alternatives to this sort of gene editing. Couples carrying genetic diseases can go through in vitro fertilization (\u003ca href=\"http://www.sart.org/SART_Success_Rates/\">IVF\u003c/a>) and have their embryos tested before being implanted in the womb.\u003c/p>\n\u003cp>\"I will admit to experiencing a sense of puzzlement,\" says \u003ca href=\"http://www.altius.org/#organization\">Fyodor Urnov\u003c/a>, an associate director at the Altius Institute for Biomedical Sciences, a nonprofit research institute in Seattle.\u003c/p>\n\u003cp>\"The question I have is: 'Why did you folks bother, given that there is a safe, effective, approved and ethical way to attain exactly the goal you have set out to do without any of the significant logical and ethic hurdles of having to edit a human embryo?\" Urnov says.\u003c/p>\n\u003cp>Amato and the other scientists on the international team say their approach could offer an alternative for couples for whom those standard options won't work or are less desirable. But they agree the work should only move forward with careful regulatory oversight to prevent abuse.\u003c/p>\n\u003cp>\"Anytime there's a new technology there's a potential for misuse. We have to acknowledge that,\" Amato says. \"Personally I don't feel that's a reason not to pursue the research if you think there's a potential benefit that outweighs that risk. And I think if you can prevent serious disease in future generations, that makes it worthwhile to pursue this.\"\u003c/p>\n\u003cp>The advance was first \u003ca href=\"https://www.technologyreview.com/s/608350/first-human-embryos-edited-in-us/\">reported\u003c/a> last week in \u003cem>Technology Review\u003c/em>, a magazine published by the Massachusetts Institute of Technology. But the details were withheld and the researchers did not elaborate until the scientific paper had finished being vetted by other scientists for publication in \u003cem>Nature.\u003c/em>\u003c/p>\n\u003cp>For their experiments, the scientists obtained sperm from a donor carrying a mutation for the heart disorder \u003ca href=\"http://www.heart.org/HEARTORG/Conditions/More/Cardiomyopathy/What-Is-Cardiomyopathy-in-Adults_UCM_444168_Article.jsp#.WYESnoTyvIU\">cardiomyopathy\u003c/a>. They then used that sperm to fertilize dozens of eggs obtained from healthy women.\u003c/p>\n\u003cp>At the same time as fertilization, the researchers injected a powerful, microscopic gene-editing tool known as \u003ca href=\"http://www.npr.org/tags/419142387/crispr\">CRISPR-Cas9\u003c/a>. The new technique makes it much easier than previous approaches to make very precise changes in DNA.\u003c/p>\n\u003cp>Several scientists likened the approach to doing surgery on fetuses when they are in the womb. But this takes that idea much further and involves repairing damaged DNA at a molecular level in the womb.\u003c/p>\n\u003cp>\"This is nano-surgery,\" says \u003ca href=\"http://arep.med.harvard.edu/gmc/\">George Church\u003c/a>, a prominent Harvard geneticist who also was not involved in the research. \"You're doing it with the finest possible scalpel.\"\u003c/p>\n\u003cp>The editing tool very accurately cut into a mutated gene known as MYBPC3, which causes cardiomyopathy. To the researchers' surprise, the cut triggered the embryos to repair the defective gene on their own. This is a process that had previously been unknown, the scientists say.\u003c/p>\n\u003cp>\"The most exciting moment was when we realized the mechanism of repair,\" Amato says. \"It was fixing itself.\"\u003c/p>\n\u003cp>The researchers then let the embryos develop for several days so they could analyze them to see how well the experiments worked. In one part of the experiments involving 58 embryos, the approach corrected the mutation in more than 70 percent of the embryos, the researchers reported.\u003c/p>\n\u003cp>\"The gene defect was corrected with high efficiency,\" Amato says.\u003c/p>\n\u003cp>In addition, a detailed genetic analysis of the embryos concluded that the gene editing had not caused safety problems.\u003c/p>\n\u003cp>\"I think this is a significant advance,\" Church says. \"This is important.\"\u003c/p>\n\u003cp>In 2015, Chinese scientists \u003ca href=\"http://www.npr.org/sections/health-shots/2015/04/23/401655818/critics-lash-out-at-chinese-scientists-who-edited-dna-in-human-embryos\">reported\u003c/a> trying to edit the DNA of embryos for the first time, also using CRISPR-Cas9. But that experiment involved embryos that could never develop normally. And while those researchers did succeed in editing the targeted defect, it also produced unintended defects elsewhere in the embryos' DNA.\u003c/p>\n\u003cp>The scientists who conducted the new experiments say they think they avoided those problems by injecting CRISPR at the same time the eggs were being fertilized by sperm.\u003c/p>\n\u003cp>\"That was key,\" Mitalipov says.\u003c/p>\n\u003cp>\u003ca href=\"https://law.wisc.edu/profiles/racharo@wisc.edu\">Alta Charo\u003c/a>, a bioethicist at the University of Wisconsin, dismissed concerns about the work leading to designer babies.\u003c/p>\n\u003cp>\"This is not the dawn of the era of the designer baby,\" says Charo, who co-chaired a committee formed by the National Academies of Sciences and the National Academy of Medicine to determine whether such experiments should be permissible. The committee \u003ca href=\"http://www.npr.org/sections/health-shots/2017/02/14/514580162/scientific-panel-says-editing-heritable-human-genes-could-be-ok-in-the-future\">concluded\u003c/a> earlier this year that gene editing of human embryos could be allowed in rare cases when no other options are available — but only to treat diseases.\u003c/p>\n\u003cp>\"I do not think that the constant drumbeat about the fear of designer baby is warranted, Charo says. \"What this is, is a possible step toward being able to edit the DNA in human embryos that's reliable and precise.\"\u003c/p>\n\u003cp>In the meantime, scientists in Britain have won \u003ca href=\"http://www.npr.org/2016/02/01/465180953/british-scientists-gain-approval-to-edit-dna-in-human-embryos\">approval \u003c/a>to use CRISPR to edit the DNA in healthy human embryos to learn more about normal human development. A \u003ca href=\"http://www.npr.org/about-npr/494863809/npr-exclusive-report-stockholm-lab-first-to-try-to-edit-dna-of-healthy-human-emb\">team in Sweden\u003c/a> has started similar experiments.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"I think this needs to be tightly regulated,\" says \u003ca href=\"http://ki.se/en/people/frelan\">Fredrik Lanner\u003c/a>, a geneticist at the Karolinska Institute in Stockholm who is conducting those experiments. \"This is very exciting. But it also could be a double-edged sword. So I think we really have to be extra cautious with this technology.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Scientists+Precisely+Edit+DNA+In+Human+Embryos+To+Fix+A+Disease+Gene&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Quitting Rates are Up, Electronic Cigarettes May be Helping",
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"content": "\u003cp>Electronic cigarettes may be a helpful tool for those who are looking to quit smoking, according to a recent \u003ca href=\"http://www.bmj.com/content/bmj/358/bmj.j3262.full.pdf\">study\u003c/a>. This complicates the public health narrative around this new tobacco product, which have \u003ca href=\"https://www.cdc.gov/mmwr/volumes/65/wr/mm6527a1.htm\">grown in popularity\u003c/a> in the U.S. over the past decade.\u003c/p>\n\u003cp>E-cigarettes are relatively new to the market, and their rapid popularity has caused public health agencies to grapple to create regulations and messaging around a technology with unclear health implications. This \u003ca href=\"http://www.bmj.com/content/bmj/358/bmj.j3262.full.pdf\">study\u003c/a>, published in the journal \u003ca href=\"http://www.bmj.com/\">BMJ\u003c/a>, puts some weight behind the idea the e-cigarettes can have a positive health impact on those who are trying to kick cigarettes.\u003c/p>\n\u003cp>The e-cigarette uses a coil to heat a nicotine solution so it can be inhaled as vapor. This process can allow users to get their nicotine fix while leaving behind the carcinogens associated with breathing in smoke. Trading in a regular cigarette for an electronic option could have significant health implications considering smoking cigarettes remains the \u003ca href=\"https://www.cdc.gov/tobacco/data_statistics/fact_sheets/fast_facts/index.htm\">leading cause\u003c/a> of preventable death in the U.S.\u003c/p>\n\u003caside class=\"pullquote alignright\">'With proper regulation, we could increase the potential of e-cigarettes to reduce the horrific toll of cigarette smoking in our society'\u003ccite>Kenneth Warner, University of Michigan to CBS News \u003c/cite>\u003c/aside>\n\u003cp>Researchers at the University of California, San Diego looked at over 160,000 people over 14 years and found that people who used e-cigarettes to quit smoking were more successful than those who didn’t.\u003c/p>\n\u003cp>[contextly_sidebar id=\"SPA31M7QbOnf9hT0QLgr17BphKjyAXaN\"]Americans are quitting smoking at higher rates, according to this study. This trend tracks neatly with an increase in the use of e-cigarettes. The study found that 5.6 percent of the smokers quit in 2014-15, which is up from the 2010-11 rates (4.5 percent). While this shift may seem small, it represents an additional 350,000 Americans quitting smoking in 2014-15.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>This study suggests that the rise in vaping may be partially responsible for a decrease in smoking. The researchers cite other likely reasons for the decrease in smoking during this time, namely \u003ca href=\"https://www.cdc.gov/mmwr/preview/mmwrhtml/mm5819a2.htm\">a federal tobacco tax\u003c/a> in 2009 and a \u003ca href=\"https://www.cdc.gov/tobacco/campaign/tips/about/campaign-overview.html\">national anti-smoking campaign\u003c/a> in 2012. This study comes up at the same time as the Food and Drug Administration is \u003ca href=\"http://www.npr.org/sections/thetwo-way/2017/07/28/540012363/fda-proposes-cutting-nicotine-amounts-in-cigarettes\">proposing\u003c/a> to cut the amount of nicotine in cigarettes, which could potentially decrease addition rates.\u003c/p>\n\u003cp>About a fifth of people who have recently quit smoking use e-cigarettes, according to the study.\u003c/p>\n\u003cp>Steven Reinberg \u003ca href=\"http://www.cbsnews.com/news/do-e-cigarettes-help-tobacco-smokers-quit/\">reports\u003c/a> for CBS News:\u003c/p>\n\u003cblockquote>\u003cp>Kenneth Warner, a professor of public health at the University of Michigan, welcomed the findings.\u003c/p>\n\u003cp>The study authors have used a large data set to address whether e-cigarettes can help adults break the cigarette habit and they determined \"e-cigarettes are helping smokers to quit,\" Warner said.\u003c/p>\n\u003cp>In the United States, public health organizations have focused almost exclusively on the potential adverse \u003ca href=\"http://www.cbsnews.com/news/teen-vaping-falls-reversing-e-cigarette-trend/\">consequences of e-cigarettes for kids\u003c/a>, to the detriment of the health of adults who might benefit from a more positive take on e-cigarettes, he said.\u003c/p>\n\u003cp>\"This study suggests that we should be receptive to the kind of approach that health authorities in England have taken, encouraging smokers who cannot quit otherwise to try e-cigarettes,\" Warner said.\u003c/p>\n\u003cp>\"With proper regulation, we could increase the potential of e-cigarettes to reduce the horrific toll of cigarette smoking in our society,\" he added.\u003c/p>\u003c/blockquote>\n\u003cp>\u003c/p>\n\u003cp>E-cigarettes remain controversial among the public health field. The Centers for Disease Control and Prevention \u003ca href=\"https://e-cigarettes.surgeongeneral.gov/documents/2016_SGR_Fact_Sheet_508.pdf\">reports\u003c/a> that they are the most commonly used tobacco product in young people, and come with their own health risks such as addition, lung disease and heavy metal exposure.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Electronic cigarettes may be a helpful tool for those who are looking to quit smoking, according to a recent \u003ca href=\"http://www.bmj.com/content/bmj/358/bmj.j3262.full.pdf\">study\u003c/a>. This complicates the public health narrative around this new tobacco product, which have \u003ca href=\"https://www.cdc.gov/mmwr/volumes/65/wr/mm6527a1.htm\">grown in popularity\u003c/a> in the U.S. over the past decade.\u003c/p>\n\u003cp>E-cigarettes are relatively new to the market, and their rapid popularity has caused public health agencies to grapple to create regulations and messaging around a technology with unclear health implications. This \u003ca href=\"http://www.bmj.com/content/bmj/358/bmj.j3262.full.pdf\">study\u003c/a>, published in the journal \u003ca href=\"http://www.bmj.com/\">BMJ\u003c/a>, puts some weight behind the idea the e-cigarettes can have a positive health impact on those who are trying to kick cigarettes.\u003c/p>\n\u003cp>The e-cigarette uses a coil to heat a nicotine solution so it can be inhaled as vapor. This process can allow users to get their nicotine fix while leaving behind the carcinogens associated with breathing in smoke. Trading in a regular cigarette for an electronic option could have significant health implications considering smoking cigarettes remains the \u003ca href=\"https://www.cdc.gov/tobacco/data_statistics/fact_sheets/fast_facts/index.htm\">leading cause\u003c/a> of preventable death in the U.S.\u003c/p>\n\u003caside class=\"pullquote alignright\">'With proper regulation, we could increase the potential of e-cigarettes to reduce the horrific toll of cigarette smoking in our society'\u003ccite>Kenneth Warner, University of Michigan to CBS News \u003c/cite>\u003c/aside>\n\u003cp>Researchers at the University of California, San Diego looked at over 160,000 people over 14 years and found that people who used e-cigarettes to quit smoking were more successful than those who didn’t.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>Americans are quitting smoking at higher rates, according to this study. This trend tracks neatly with an increase in the use of e-cigarettes. The study found that 5.6 percent of the smokers quit in 2014-15, which is up from the 2010-11 rates (4.5 percent). While this shift may seem small, it represents an additional 350,000 Americans quitting smoking in 2014-15.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>This study suggests that the rise in vaping may be partially responsible for a decrease in smoking. The researchers cite other likely reasons for the decrease in smoking during this time, namely \u003ca href=\"https://www.cdc.gov/mmwr/preview/mmwrhtml/mm5819a2.htm\">a federal tobacco tax\u003c/a> in 2009 and a \u003ca href=\"https://www.cdc.gov/tobacco/campaign/tips/about/campaign-overview.html\">national anti-smoking campaign\u003c/a> in 2012. This study comes up at the same time as the Food and Drug Administration is \u003ca href=\"http://www.npr.org/sections/thetwo-way/2017/07/28/540012363/fda-proposes-cutting-nicotine-amounts-in-cigarettes\">proposing\u003c/a> to cut the amount of nicotine in cigarettes, which could potentially decrease addition rates.\u003c/p>\n\u003cp>About a fifth of people who have recently quit smoking use e-cigarettes, according to the study.\u003c/p>\n\u003cp>Steven Reinberg \u003ca href=\"http://www.cbsnews.com/news/do-e-cigarettes-help-tobacco-smokers-quit/\">reports\u003c/a> for CBS News:\u003c/p>\n\u003cblockquote>\u003cp>Kenneth Warner, a professor of public health at the University of Michigan, welcomed the findings.\u003c/p>\n\u003cp>The study authors have used a large data set to address whether e-cigarettes can help adults break the cigarette habit and they determined \"e-cigarettes are helping smokers to quit,\" Warner said.\u003c/p>\n\u003cp>In the United States, public health organizations have focused almost exclusively on the potential adverse \u003ca href=\"http://www.cbsnews.com/news/teen-vaping-falls-reversing-e-cigarette-trend/\">consequences of e-cigarettes for kids\u003c/a>, to the detriment of the health of adults who might benefit from a more positive take on e-cigarettes, he said.\u003c/p>\n\u003cp>\"This study suggests that we should be receptive to the kind of approach that health authorities in England have taken, encouraging smokers who cannot quit otherwise to try e-cigarettes,\" Warner said.\u003c/p>\n\u003cp>\"With proper regulation, we could increase the potential of e-cigarettes to reduce the horrific toll of cigarette smoking in our society,\" he added.\u003c/p>\u003c/blockquote>\n\u003cp>\u003c/p>\n\u003cp>E-cigarettes remain controversial among the public health field. The Centers for Disease Control and Prevention \u003ca href=\"https://e-cigarettes.surgeongeneral.gov/documents/2016_SGR_Fact_Sheet_508.pdf\">reports\u003c/a> that they are the most commonly used tobacco product in young people, and come with their own health risks such as addition, lung disease and heavy metal exposure.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Now's the Time to Consider the Ethics of Brain-Computer Interface Tech",
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"content": "\u003cp>In the 1995 film \u003ca href=\"http://www.imdb.com/title/tt0112462/\">“Batman Forever\u003c/a>,” the Riddler used 3-D television to secretly access viewers’ most personal thoughts in his hunt for Batman’s true identity. By 2011, the metrics company \u003ca href=\"http://www.nielsen.com/us/en/press-room/2011/nielsen-acquires-neurofocus.html\">Nielsen had acquired Neurofocus\u003c/a> and had created a “consumer neuroscience” division that uses \u003ca href=\"http://www.nielsen.com/us/en/solutions/capabilities/consumer-neuroscience.html\">integrated conscious and unconscious data\u003c/a> to track customer decision-making habits. What was once a nefarious scheme in a Hollywood blockbuster seems poised to become a reality.\u003c/p>\n\u003cp>Recent announcements \u003ca href=\"https://www.theverge.com/2017/3/27/15077864/elon-musk-neuralink-brain-computer-interface-ai-cyborgs\">by Elon Musk\u003c/a> \u003ca href=\"https://techcrunch.com/2017/04/19/facebook-brain-interface/\">and Facebook\u003c/a> about \u003ca href=\"https://theconversation.com/melding-mind-and-machine-how-close-are-we-75589\">brain-computer interface (BCI) technology\u003c/a> are just the latest headlines in an ongoing science-fiction-becomes-reality story.\u003c/p>\n\u003cp>BCIs use brain signals to control objects in the outside world. They’re a potentially world-changing innovation – imagine being paralyzed but able to “reach” for something with a prosthetic arm \u003ca href=\"http://www.slate.com/blogs/future_tense/2012/12/21/jan_scheuermann_footage_of_paralyzed_woman_eating_chocolate_with_robotic.html\">just by thinking about it\u003c/a>. But the revolutionary technology also raises concerns. Here at the University of Washington’s Center for Sensorimotor Neural Engineering (\u003ca href=\"http://www.csne-erc.org/\">CSNE\u003c/a>) we and our colleagues are researching BCI technology – and a crucial part of that includes working on issues such as neuroethics and neural security. Ethicists and engineers are working together to understand and quantify risks and develop ways to protect the public now.\u003c/p>\n\u003cfigure id=\"attachment_432341\" class=\"wp-caption aligncenter\" style=\"max-width: 754px\">\u003cimg class=\"size-full wp-image-432341\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/07/file-20170607-29557-1ggtcor.jpg\" alt=\"\" width=\"754\" height=\"524\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-29557-1ggtcor.jpg 754w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-29557-1ggtcor-160x111.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-29557-1ggtcor-240x167.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-29557-1ggtcor-375x261.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-29557-1ggtcor-520x361.jpg 520w\" sizes=\"(max-width: 754px) 100vw, 754px\">\u003cfigcaption class=\"wp-caption-text\">Examples of event-related potentials (ERPs), electrical signals produced by the brain in response to a stimulus. \u003ccite>(Tamara Bonaci, CC BY-ND)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Picking up on P300 signals\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>All BCI technology relies on being able to collect information from a brain that a device can then use or act on in some way. There are numerous places from which signals can be recorded, as well as infinite ways the data can be analyzed, so there are many possibilities for how a BCI can be used.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Some BCI researchers zero in on one particular kind of regularly occurring brain signal that alerts us to important changes in our environment. Neuroscientists call these signals “\u003ca href=\"https://doi.org/10.4103/0972-6748.57865\">event-related potentials\u003c/a>.” In the lab, they help us identify a reaction to a stimulus.\u003c/p>\n\u003cp>In particular, we capitalize on one of these specific signals, \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2715154/\">called the P300\u003c/a>. It’s a positive peak of electricity that occurs toward the back of the head about 300 milliseconds after the stimulus is shown. The P300 alerts the rest of your brain to an “oddball” that stands out from the rest of what’s around you.\u003c/p>\n\u003cp>For example, you don’t stop and stare at each person’s face when you’re searching for your friend at the park. Instead, if we were recording your brain signals as you scanned the crowd, there would be a detectable P300 response when you saw someone who could be your friend. The P300 carries an unconscious message alerting you to something important that deserves attention. These signals are part of a still unknown brain pathway that aids in detection and focusing attention.\u003c/p>\n\u003cp>\u003cstrong>Reading your mind using P300s\u003c/strong>\u003c/p>\n\u003cp>P300s reliably occur any time you notice something rare or disjointed, like when you find the shirt you were looking for in your closet or your car in a parking lot. Researchers can use the P300 in an experimental setting to determine what is important or relevant to you. That’s led to the creation of devices like spellers that allow paralyzed individuals to type using their thoughts, \u003ca href=\"https://doi.org/10.1016/0013-4694(88)90149-6\">one character at a time\u003c/a>.\u003c/p>\n\u003cp>It also can be used to determine what you know, in what’s called a “\u003ca href=\"https://dx.doi.org/10.3109/00207458808985770\">guilty knowledge test\u003c/a>.” In the lab, subjects are asked to choose an item to “steal” or hide, and are then shown many images repeatedly of both unrelated and related items. For instance, subjects choose between a watch and a necklace, and are then shown typical items from a jewelry box; a P300 appears when the subject is presented with the image of the item he took.\u003c/p>\n\u003cfigure id=\"attachment_432342\" class=\"wp-caption alignright\" style=\"max-width: 754px\">\u003cimg class=\"size-full wp-image-432342\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/07/file-20170607-25764-pbljrg.jpg\" alt=\"\" width=\"754\" height=\"503\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-pbljrg.jpg 754w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-pbljrg-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-pbljrg-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-pbljrg-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-pbljrg-520x347.jpg 520w\" sizes=\"(max-width: 754px) 100vw, 754px\">\u003cfigcaption class=\"wp-caption-text\">For now, most BCI technology relies on somewhat cumbersome EEG hardware that is definitely not stealth. \u003ccite>(Mark Stone, University of Washington, CC BY-ND)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Everyone’s P300 is unique. In order to know what they’re looking for, researchers need “training” data. These are previously obtained brain signal recordings that researchers are confident contain P300s; they’re then used to calibrate the system. Since the test measures an unconscious neural signal that you don’t even know you have, can you fool it? Maybe, if you \u003ca href=\"https://doi.org/10.1111/j.1469-8986.2004.00158.x\">know that you’re being probed and what the stimuli are\u003c/a>.\u003c/p>\n\u003cp>Techniques like these are still considered unreliable and unproven, and thus U.S. courts have \u003ca href=\"https://doi.org/10.1176/ps.2007.58.4.460\">resisted admitting P300 data as evidence\u003c/a>.\u003c/p>\n\u003cp>Imagine that instead of using a P300 signal to solve the mystery of a “stolen” item in the lab, someone used this technology to extract information about what month you were born or which bank you use – without your telling them. Our research group has \u003ca href=\"https://digital.lib.washington.edu/researchworks/handle/1773/33808\">collected data suggesting this is possible\u003c/a>. Just using an individual’s brain activity – specifically, their P300 response – we could determine a subject’s preferences for things like favorite coffee brand or favorite sports.\u003c/p>\n\u003cp>But we could do it only when subject-specific training data were available. What if we could figure out someone’s preferences without previous knowledge of their brain signal patterns? Without the need for training, users could simply put on a device and go, skipping the step of loading a personal training profile or spending time in calibration. Research on trained and untrained devices is the subject of \u003ca href=\"http://brl.ee.washington.edu/neural-engineering/bci-security/\">continuing experiments at the University of Washington\u003c/a> \u003ca href=\"https://perso.uclouvain.be/fstandae/PUBLIS/190.pdf\">and elsewhere\u003c/a>.\u003c/p>\n\u003caside class=\"pullquote alignright\">'It’s when the technology is able to “read” someone’s mind who isn’t actively cooperating that ethical issues become particularly pressing.\u003c/aside>\n\u003cp>It’s when the technology is able to “read” someone’s mind who isn’t actively cooperating that ethical issues become particularly pressing. After all, we willingly trade bits of our privacy all the time – when we open our mouths to have conversations or use GPS devices that allow companies to collect data about us. But in these cases we consent to sharing what’s in our minds. The difference with next-generation P300 technology under development is that the protection consent gives us may get bypassed altogether.\u003c/p>\n\u003cp>What if it’s possible to decode what you’re thinking or planning without you even knowing? Will you feel violated? Will you feel a loss of control? Privacy implications may be wide-ranging. Maybe advertisers could know your preferred brands and send you personalized ads – which may be convenient or creepy. Or maybe malicious entities could determine where you bank and your account’s PIN – which would be alarming.\u003c/p>\n\u003cp>[contextly_sidebar id=\"ujENBz5yrLbRLuGEZ0IHfRd4FB2t2l2M\"]\u003cstrong>With great power comes great responsibility\u003c/strong>\u003c/p>\n\u003cp>The potential ability to determine individuals’ preferences and personal information using their own brain signals has spawned a number of difficult but pressing questions: Should we be able to keep our neural signals private? That is, should neural security \u003ca href=\"https://doi.org/10.1186/s40504-017-0050-1\">be a human right\u003c/a>? How do we \u003ca href=\"https://dx.doi.org/10.2139/ssrn.2427564\">adequately protect and store all the neural data\u003c/a> being recorded for research, and soon for leisure? How do consumers know if any protective or anonymization measures are being made with their neural data? As of now, neural data collected for commercial uses are not subject to the same legal protections covering \u003ca href=\"https://www.hhs.gov/hipaa/index.html\">biomedical research or health care\u003c/a>. Should neural data be treated differently?\u003c/p>\n\u003cp>These are the kinds of conundrums that are best addressed by neural engineers and ethicists working together. Putting ethicists in labs alongside engineers – \u003ca href=\"http://www.csne-erc.org/research/neuroethics\">as we have done at the CSNE\u003c/a> – is one way to ensure that privacy and security risks of neurotechnology, as well as other ethically important issues, are an active part of the research process instead of an afterthought. For instance, Tim Brown, an ethicist at the CSNE, is “housed” within a neural engineering research lab, allowing him to have daily conversations with researchers about ethical concerns. He’s also easily able to interact with – and, in fact, interview – research subjects about their \u003ca href=\"http://www.csne-erc.org/engage-enable/post/ethics-cornerstone-neural-engineering-research\">ethical concerns about brain research\u003c/a>.\u003c/p>\n\u003cp>There are important ethical and legal lessons to be drawn about technology and privacy from other areas, such as \u003ca href=\"https://www.genome.gov/27561246/privacy-in-genomics\">genetics\u003c/a> and \u003ca href=\"http://www.theneuroethicsblog.com/2011/08/ethical-dimenstions-of-neuromarketing.html\">neuromarketing\u003c/a>. But there seems to be something important and different about reading neural data. They’re more intimately connected to the mind and who we take ourselves to be. As such, ethical issues raised by BCI demand special attention.\u003c/p>\n\u003cfigure id=\"attachment_432343\" class=\"wp-caption aligncenter\" style=\"max-width: 754px\">\u003cimg class=\"size-full wp-image-432343\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/07/file-20170607-25764-qhx5o4.jpg\" alt=\"\" width=\"754\" height=\"503\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-qhx5o4.jpg 754w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-qhx5o4-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-qhx5o4-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-qhx5o4-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-qhx5o4-520x347.jpg 520w\" sizes=\"(max-width: 754px) 100vw, 754px\">\u003cfigcaption class=\"wp-caption-text\">Neuroethicists from the UW Philosophy department discuss issues related to neural implants. \u003ccite>(Mark Stone, University of Washington, CC BY-ND)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Working on ethics while tech’s in its infancy\u003c/strong>\u003c/p>\n\u003cp>As we wrestle with how to address these privacy and security issues, there are two features of current P300 technology that will buy us time.\u003c/p>\n\u003cp>First, most commercial devices available use dry electrodes, which rely solely on skin contact to conduct electrical signals. This technology is prone to a low signal-to-noise ratio, meaning that we can extract only relatively basic forms of information from users. The brain signals we record are known to be highly variable (even for the same person) due to things like electrode movement and the constantly changing nature of brain signals themselves. Second, electrodes are not always in ideal locations to record.\u003c/p>\n\u003cp>All together, this inherent lack of reliability means that BCI devices are not nearly as ubiquitous today as they may be in the future. As electrode hardware and signal processing continue to improve, it will be easier to continuously use devices like these, and make it easier to extract personal information from an unknowing individual as well. The safest advice would be to not use these devices at all.\u003c/p>\n\u003cp>The goal should be that the ethical standards and the technology will mature together to ensure future BCI users are confident their privacy is being protected as they use these kinds of devices. It’s a rare opportunity for scientists, engineers, ethicists and eventually regulators to work together to create even better products than were originally dreamed of in science fiction.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>This article was originally published on The Conversation. Read the original article \u003ca href=\"https://theconversation.com/helping-or-hacking-engineers-and-ethicists-must-work-together-on-brain-computer-interface-technology-77759\" target=\"_blank\" rel=\"noopener noreferrer\">here\u003c/a>.\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>In the 1995 film \u003ca href=\"http://www.imdb.com/title/tt0112462/\">“Batman Forever\u003c/a>,” the Riddler used 3-D television to secretly access viewers’ most personal thoughts in his hunt for Batman’s true identity. By 2011, the metrics company \u003ca href=\"http://www.nielsen.com/us/en/press-room/2011/nielsen-acquires-neurofocus.html\">Nielsen had acquired Neurofocus\u003c/a> and had created a “consumer neuroscience” division that uses \u003ca href=\"http://www.nielsen.com/us/en/solutions/capabilities/consumer-neuroscience.html\">integrated conscious and unconscious data\u003c/a> to track customer decision-making habits. What was once a nefarious scheme in a Hollywood blockbuster seems poised to become a reality.\u003c/p>\n\u003cp>Recent announcements \u003ca href=\"https://www.theverge.com/2017/3/27/15077864/elon-musk-neuralink-brain-computer-interface-ai-cyborgs\">by Elon Musk\u003c/a> \u003ca href=\"https://techcrunch.com/2017/04/19/facebook-brain-interface/\">and Facebook\u003c/a> about \u003ca href=\"https://theconversation.com/melding-mind-and-machine-how-close-are-we-75589\">brain-computer interface (BCI) technology\u003c/a> are just the latest headlines in an ongoing science-fiction-becomes-reality story.\u003c/p>\n\u003cp>BCIs use brain signals to control objects in the outside world. They’re a potentially world-changing innovation – imagine being paralyzed but able to “reach” for something with a prosthetic arm \u003ca href=\"http://www.slate.com/blogs/future_tense/2012/12/21/jan_scheuermann_footage_of_paralyzed_woman_eating_chocolate_with_robotic.html\">just by thinking about it\u003c/a>. But the revolutionary technology also raises concerns. Here at the University of Washington’s Center for Sensorimotor Neural Engineering (\u003ca href=\"http://www.csne-erc.org/\">CSNE\u003c/a>) we and our colleagues are researching BCI technology – and a crucial part of that includes working on issues such as neuroethics and neural security. Ethicists and engineers are working together to understand and quantify risks and develop ways to protect the public now.\u003c/p>\n\u003cfigure id=\"attachment_432341\" class=\"wp-caption aligncenter\" style=\"max-width: 754px\">\u003cimg class=\"size-full wp-image-432341\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/07/file-20170607-29557-1ggtcor.jpg\" alt=\"\" width=\"754\" height=\"524\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-29557-1ggtcor.jpg 754w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-29557-1ggtcor-160x111.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-29557-1ggtcor-240x167.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-29557-1ggtcor-375x261.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-29557-1ggtcor-520x361.jpg 520w\" sizes=\"(max-width: 754px) 100vw, 754px\">\u003cfigcaption class=\"wp-caption-text\">Examples of event-related potentials (ERPs), electrical signals produced by the brain in response to a stimulus. \u003ccite>(Tamara Bonaci, CC BY-ND)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Picking up on P300 signals\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>All BCI technology relies on being able to collect information from a brain that a device can then use or act on in some way. There are numerous places from which signals can be recorded, as well as infinite ways the data can be analyzed, so there are many possibilities for how a BCI can be used.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Some BCI researchers zero in on one particular kind of regularly occurring brain signal that alerts us to important changes in our environment. Neuroscientists call these signals “\u003ca href=\"https://doi.org/10.4103/0972-6748.57865\">event-related potentials\u003c/a>.” In the lab, they help us identify a reaction to a stimulus.\u003c/p>\n\u003cp>In particular, we capitalize on one of these specific signals, \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2715154/\">called the P300\u003c/a>. It’s a positive peak of electricity that occurs toward the back of the head about 300 milliseconds after the stimulus is shown. The P300 alerts the rest of your brain to an “oddball” that stands out from the rest of what’s around you.\u003c/p>\n\u003cp>For example, you don’t stop and stare at each person’s face when you’re searching for your friend at the park. Instead, if we were recording your brain signals as you scanned the crowd, there would be a detectable P300 response when you saw someone who could be your friend. The P300 carries an unconscious message alerting you to something important that deserves attention. These signals are part of a still unknown brain pathway that aids in detection and focusing attention.\u003c/p>\n\u003cp>\u003cstrong>Reading your mind using P300s\u003c/strong>\u003c/p>\n\u003cp>P300s reliably occur any time you notice something rare or disjointed, like when you find the shirt you were looking for in your closet or your car in a parking lot. Researchers can use the P300 in an experimental setting to determine what is important or relevant to you. That’s led to the creation of devices like spellers that allow paralyzed individuals to type using their thoughts, \u003ca href=\"https://doi.org/10.1016/0013-4694(88)90149-6\">one character at a time\u003c/a>.\u003c/p>\n\u003cp>It also can be used to determine what you know, in what’s called a “\u003ca href=\"https://dx.doi.org/10.3109/00207458808985770\">guilty knowledge test\u003c/a>.” In the lab, subjects are asked to choose an item to “steal” or hide, and are then shown many images repeatedly of both unrelated and related items. For instance, subjects choose between a watch and a necklace, and are then shown typical items from a jewelry box; a P300 appears when the subject is presented with the image of the item he took.\u003c/p>\n\u003cfigure id=\"attachment_432342\" class=\"wp-caption alignright\" style=\"max-width: 754px\">\u003cimg class=\"size-full wp-image-432342\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/07/file-20170607-25764-pbljrg.jpg\" alt=\"\" width=\"754\" height=\"503\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-pbljrg.jpg 754w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-pbljrg-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-pbljrg-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-pbljrg-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-pbljrg-520x347.jpg 520w\" sizes=\"(max-width: 754px) 100vw, 754px\">\u003cfigcaption class=\"wp-caption-text\">For now, most BCI technology relies on somewhat cumbersome EEG hardware that is definitely not stealth. \u003ccite>(Mark Stone, University of Washington, CC BY-ND)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Everyone’s P300 is unique. In order to know what they’re looking for, researchers need “training” data. These are previously obtained brain signal recordings that researchers are confident contain P300s; they’re then used to calibrate the system. Since the test measures an unconscious neural signal that you don’t even know you have, can you fool it? Maybe, if you \u003ca href=\"https://doi.org/10.1111/j.1469-8986.2004.00158.x\">know that you’re being probed and what the stimuli are\u003c/a>.\u003c/p>\n\u003cp>Techniques like these are still considered unreliable and unproven, and thus U.S. courts have \u003ca href=\"https://doi.org/10.1176/ps.2007.58.4.460\">resisted admitting P300 data as evidence\u003c/a>.\u003c/p>\n\u003cp>Imagine that instead of using a P300 signal to solve the mystery of a “stolen” item in the lab, someone used this technology to extract information about what month you were born or which bank you use – without your telling them. Our research group has \u003ca href=\"https://digital.lib.washington.edu/researchworks/handle/1773/33808\">collected data suggesting this is possible\u003c/a>. Just using an individual’s brain activity – specifically, their P300 response – we could determine a subject’s preferences for things like favorite coffee brand or favorite sports.\u003c/p>\n\u003cp>But we could do it only when subject-specific training data were available. What if we could figure out someone’s preferences without previous knowledge of their brain signal patterns? Without the need for training, users could simply put on a device and go, skipping the step of loading a personal training profile or spending time in calibration. Research on trained and untrained devices is the subject of \u003ca href=\"http://brl.ee.washington.edu/neural-engineering/bci-security/\">continuing experiments at the University of Washington\u003c/a> \u003ca href=\"https://perso.uclouvain.be/fstandae/PUBLIS/190.pdf\">and elsewhere\u003c/a>.\u003c/p>\n\u003caside class=\"pullquote alignright\">'It’s when the technology is able to “read” someone’s mind who isn’t actively cooperating that ethical issues become particularly pressing.\u003c/aside>\n\u003cp>It’s when the technology is able to “read” someone’s mind who isn’t actively cooperating that ethical issues become particularly pressing. After all, we willingly trade bits of our privacy all the time – when we open our mouths to have conversations or use GPS devices that allow companies to collect data about us. But in these cases we consent to sharing what’s in our minds. The difference with next-generation P300 technology under development is that the protection consent gives us may get bypassed altogether.\u003c/p>\n\u003cp>What if it’s possible to decode what you’re thinking or planning without you even knowing? Will you feel violated? Will you feel a loss of control? Privacy implications may be wide-ranging. Maybe advertisers could know your preferred brands and send you personalized ads – which may be convenient or creepy. Or maybe malicious entities could determine where you bank and your account’s PIN – which would be alarming.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>\u003cstrong>With great power comes great responsibility\u003c/strong>\u003c/p>\n\u003cp>The potential ability to determine individuals’ preferences and personal information using their own brain signals has spawned a number of difficult but pressing questions: Should we be able to keep our neural signals private? That is, should neural security \u003ca href=\"https://doi.org/10.1186/s40504-017-0050-1\">be a human right\u003c/a>? How do we \u003ca href=\"https://dx.doi.org/10.2139/ssrn.2427564\">adequately protect and store all the neural data\u003c/a> being recorded for research, and soon for leisure? How do consumers know if any protective or anonymization measures are being made with their neural data? As of now, neural data collected for commercial uses are not subject to the same legal protections covering \u003ca href=\"https://www.hhs.gov/hipaa/index.html\">biomedical research or health care\u003c/a>. Should neural data be treated differently?\u003c/p>\n\u003cp>These are the kinds of conundrums that are best addressed by neural engineers and ethicists working together. Putting ethicists in labs alongside engineers – \u003ca href=\"http://www.csne-erc.org/research/neuroethics\">as we have done at the CSNE\u003c/a> – is one way to ensure that privacy and security risks of neurotechnology, as well as other ethically important issues, are an active part of the research process instead of an afterthought. For instance, Tim Brown, an ethicist at the CSNE, is “housed” within a neural engineering research lab, allowing him to have daily conversations with researchers about ethical concerns. He’s also easily able to interact with – and, in fact, interview – research subjects about their \u003ca href=\"http://www.csne-erc.org/engage-enable/post/ethics-cornerstone-neural-engineering-research\">ethical concerns about brain research\u003c/a>.\u003c/p>\n\u003cp>There are important ethical and legal lessons to be drawn about technology and privacy from other areas, such as \u003ca href=\"https://www.genome.gov/27561246/privacy-in-genomics\">genetics\u003c/a> and \u003ca href=\"http://www.theneuroethicsblog.com/2011/08/ethical-dimenstions-of-neuromarketing.html\">neuromarketing\u003c/a>. But there seems to be something important and different about reading neural data. They’re more intimately connected to the mind and who we take ourselves to be. As such, ethical issues raised by BCI demand special attention.\u003c/p>\n\u003cfigure id=\"attachment_432343\" class=\"wp-caption aligncenter\" style=\"max-width: 754px\">\u003cimg class=\"size-full wp-image-432343\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/07/file-20170607-25764-qhx5o4.jpg\" alt=\"\" width=\"754\" height=\"503\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-qhx5o4.jpg 754w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-qhx5o4-160x107.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-qhx5o4-240x160.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-qhx5o4-375x250.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/file-20170607-25764-qhx5o4-520x347.jpg 520w\" sizes=\"(max-width: 754px) 100vw, 754px\">\u003cfigcaption class=\"wp-caption-text\">Neuroethicists from the UW Philosophy department discuss issues related to neural implants. \u003ccite>(Mark Stone, University of Washington, CC BY-ND)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Working on ethics while tech’s in its infancy\u003c/strong>\u003c/p>\n\u003cp>As we wrestle with how to address these privacy and security issues, there are two features of current P300 technology that will buy us time.\u003c/p>\n\u003cp>First, most commercial devices available use dry electrodes, which rely solely on skin contact to conduct electrical signals. This technology is prone to a low signal-to-noise ratio, meaning that we can extract only relatively basic forms of information from users. The brain signals we record are known to be highly variable (even for the same person) due to things like electrode movement and the constantly changing nature of brain signals themselves. Second, electrodes are not always in ideal locations to record.\u003c/p>\n\u003cp>All together, this inherent lack of reliability means that BCI devices are not nearly as ubiquitous today as they may be in the future. As electrode hardware and signal processing continue to improve, it will be easier to continuously use devices like these, and make it easier to extract personal information from an unknowing individual as well. The safest advice would be to not use these devices at all.\u003c/p>\n\u003cp>The goal should be that the ethical standards and the technology will mature together to ensure future BCI users are confident their privacy is being protected as they use these kinds of devices. It’s a rare opportunity for scientists, engineers, ethicists and eventually regulators to work together to create even better products than were originally dreamed of in science fiction.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>This article was originally published on The Conversation. Read the original article \u003ca href=\"https://theconversation.com/helping-or-hacking-engineers-and-ethicists-must-work-together-on-brain-computer-interface-technology-77759\" target=\"_blank\" rel=\"noopener noreferrer\">here\u003c/a>.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>In a step that some of the nation’s leading scientists have long warned against and that has never before been accomplished, biologists in Oregon have edited the DNA of viable human embryos efficiently and apparently with few mistakes, according to a \u003ca href=\"https://www.technologyreview.com/s/608350/first-human-embryos-edited-in-us/\" target=\"_blank\" rel=\"noopener noreferrer\">report\u003c/a> in Technology Review.\u003c/p>\n\u003cp>The experiment, using the revolutionary genome-editing technique \u003ca href=\"https://www.statnews.com/2017/06/11/crispr-jennifer-doudna-book/\" target=\"_blank\" rel=\"noopener noreferrer\">CRISPR-Cas9\u003c/a>, was led by \u003ca href=\"https://www.statnews.com/2016/07/08/fertility-gene-therapy-mitalipov/\" target=\"_blank\" rel=\"noopener noreferrer\">Shoukhrat Mitalipov\u003c/a> of Oregon Health & Science University. It went beyond previous experiments using CRISPR to alter the DNA of human embryos, all of which were conducted in China, in that it edited the genomes of many more embryos and targeted a gene associated with a significant human disease.\u003c/p>\n\u003cp>“This is the kind of research that is essential if we are to know if it’s possible to safely and precisely make corrections” in embryos’ DNA to repair disease-causing genes,” legal scholar and bioethicist R. Alta Charo of the University of Wisconsin, Madison, told STAT. “While there will be time for the public to decide if they want to get rid of regulatory obstacles to these studies, I do not find them inherently unethical.” Those regulatory barriers include a \u003ca href=\"https://www.nih.gov/about-nih/who-we-are/nih-director/statements/statement-nih-funding-research-using-gene-editing-technologies-human-embryos\">ban\u003c/a> on using National Institutes of Health funding for experiments that use genome-editing technologies in human embryos.\u003c/p>\n\u003cp>The \u003ca href=\"https://link.springer.com/article/10.1007%2Fs13238-015-0153-5\">first \u003c/a>experiment using CRISPR to alter the DNA of human embryos, in 2015, used embryos obtained from fertility clinics that had such serious genetic defects they could never have developed. In the new work, Technology Review reported, Mitalipov and his colleagues created human embryos using sperm donated by men with the genetic mutation that they planned to try to repair with CRISPR. The embryos are described as “clinical quality.” A 2017 \u003ca href=\"https://link.springer.com/article/10.1007%2Fs00438-017-1299-z\">experiment\u003c/a>, also in China, used CRISPR to edit DNA in normal, presumably viable fertilized eggs, or one-cell human embryos.\u003c/p>\n\u003cp>Also in contrast to the experiments in China, those led by Mitalipov reportedly produced very few “\u003ca href=\"https://www.statnews.com/2016/07/18/crispr-off-target-effects/\" target=\"_blank\" rel=\"noopener noreferrer\">off-target\u003c/a>” effects, or editing of genes that CRISPR was supposed to leave alone. And the experiment avoided what is called “mosaicism,” in which only some cells of an embryo have the intended DNA changes. The embryos were not allowed to develop beyond a very early stage.\u003c/p>\n\u003caside class=\"pullquote alignright\">If the embryo is born and grows to adulthood, any children he or she has will inherit the genetic alteration. That has led to fears that such manipulations could alter the course of human evolution.\u003c/aside>\n\u003cp>Because changing the DNA of an early embryo results in changes to cells that will eventually produce sperm and eggs, if the embryo is born and grows to adulthood, any children he or she has will inherit the genetic alteration, which is called germline editing. That has led to fears that such manipulations could alter the course of human evolution.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>It has also triggered warnings about “designer babies,” in which parents customize their IVF embryos by adding, removing, or changing genes for certain traits.\u003c/p>\n\u003cp>A recent \u003ca href=\"https://www.statnews.com/2017/02/14/national-academy-crispr-report/\">report\u003c/a> on genome editing from the National Academies did not call for a moratorium on research into germline editing, arguing that it might one day be a way for some parents to have healthy, biological children, such as when both mother and father carry genetic mutations that cause severe diseases.\u003c/p>\n\u003cp>“But we anticipated that there would need to be a lot of research to see if you could make these changes without any unintentional effects,”said Charo, who co-chaired the Academies committee. Mitalipov, who did not respond to requests for comment, has now shown that the answer to that might be yes.\u003c/p>\n\u003cp>Some scholars questioned how important the new study is, however. Stanford University law professor and bioethicist Hank Greely \u003ca href=\"https://twitter.com/HankGreelyLSJU/status/890370419651366912\">tweeted\u003c/a> that “the key point” is that no one has tried to implant any edited embryos. “Research embryos” that are “not to be transferred for possible implantation” are “not a big deal,” he \u003ca href=\"https://twitter.com/HankGreelyLSJU/status/890371791947833344\">argued\u003c/a>.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>This \u003ca href=\"https://www.statnews.com/2017/07/26/human-embryos-edited/\" target=\"_blank\" rel=\"noopener noreferrer\">story\u003c/a> has been updated with additional comments by experts and details of similar experiments. It \u003c/em>\u003cem>was originally published by STAT, an online publication of Boston Globe Media that covers health, medicine and scientific discovery.\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>In a step that some of the nation’s leading scientists have long warned against and that has never before been accomplished, biologists in Oregon have edited the DNA of viable human embryos efficiently and apparently with few mistakes, according to a \u003ca href=\"https://www.technologyreview.com/s/608350/first-human-embryos-edited-in-us/\" target=\"_blank\" rel=\"noopener noreferrer\">report\u003c/a> in Technology Review.\u003c/p>\n\u003cp>The experiment, using the revolutionary genome-editing technique \u003ca href=\"https://www.statnews.com/2017/06/11/crispr-jennifer-doudna-book/\" target=\"_blank\" rel=\"noopener noreferrer\">CRISPR-Cas9\u003c/a>, was led by \u003ca href=\"https://www.statnews.com/2016/07/08/fertility-gene-therapy-mitalipov/\" target=\"_blank\" rel=\"noopener noreferrer\">Shoukhrat Mitalipov\u003c/a> of Oregon Health & Science University. It went beyond previous experiments using CRISPR to alter the DNA of human embryos, all of which were conducted in China, in that it edited the genomes of many more embryos and targeted a gene associated with a significant human disease.\u003c/p>\n\u003cp>“This is the kind of research that is essential if we are to know if it’s possible to safely and precisely make corrections” in embryos’ DNA to repair disease-causing genes,” legal scholar and bioethicist R. Alta Charo of the University of Wisconsin, Madison, told STAT. “While there will be time for the public to decide if they want to get rid of regulatory obstacles to these studies, I do not find them inherently unethical.” Those regulatory barriers include a \u003ca href=\"https://www.nih.gov/about-nih/who-we-are/nih-director/statements/statement-nih-funding-research-using-gene-editing-technologies-human-embryos\">ban\u003c/a> on using National Institutes of Health funding for experiments that use genome-editing technologies in human embryos.\u003c/p>\n\u003cp>The \u003ca href=\"https://link.springer.com/article/10.1007%2Fs13238-015-0153-5\">first \u003c/a>experiment using CRISPR to alter the DNA of human embryos, in 2015, used embryos obtained from fertility clinics that had such serious genetic defects they could never have developed. In the new work, Technology Review reported, Mitalipov and his colleagues created human embryos using sperm donated by men with the genetic mutation that they planned to try to repair with CRISPR. The embryos are described as “clinical quality.” A 2017 \u003ca href=\"https://link.springer.com/article/10.1007%2Fs00438-017-1299-z\">experiment\u003c/a>, also in China, used CRISPR to edit DNA in normal, presumably viable fertilized eggs, or one-cell human embryos.\u003c/p>\n\u003cp>Also in contrast to the experiments in China, those led by Mitalipov reportedly produced very few “\u003ca href=\"https://www.statnews.com/2016/07/18/crispr-off-target-effects/\" target=\"_blank\" rel=\"noopener noreferrer\">off-target\u003c/a>” effects, or editing of genes that CRISPR was supposed to leave alone. And the experiment avoided what is called “mosaicism,” in which only some cells of an embryo have the intended DNA changes. The embryos were not allowed to develop beyond a very early stage.\u003c/p>\n\u003caside class=\"pullquote alignright\">If the embryo is born and grows to adulthood, any children he or she has will inherit the genetic alteration. That has led to fears that such manipulations could alter the course of human evolution.\u003c/aside>\n\u003cp>Because changing the DNA of an early embryo results in changes to cells that will eventually produce sperm and eggs, if the embryo is born and grows to adulthood, any children he or she has will inherit the genetic alteration, which is called germline editing. That has led to fears that such manipulations could alter the course of human evolution.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>It has also triggered warnings about “designer babies,” in which parents customize their IVF embryos by adding, removing, or changing genes for certain traits.\u003c/p>\n\u003cp>A recent \u003ca href=\"https://www.statnews.com/2017/02/14/national-academy-crispr-report/\">report\u003c/a> on genome editing from the National Academies did not call for a moratorium on research into germline editing, arguing that it might one day be a way for some parents to have healthy, biological children, such as when both mother and father carry genetic mutations that cause severe diseases.\u003c/p>\n\u003cp>“But we anticipated that there would need to be a lot of research to see if you could make these changes without any unintentional effects,”said Charo, who co-chaired the Academies committee. Mitalipov, who did not respond to requests for comment, has now shown that the answer to that might be yes.\u003c/p>\n\u003cp>Some scholars questioned how important the new study is, however. Stanford University law professor and bioethicist Hank Greely \u003ca href=\"https://twitter.com/HankGreelyLSJU/status/890370419651366912\">tweeted\u003c/a> that “the key point” is that no one has tried to implant any edited embryos. “Research embryos” that are “not to be transferred for possible implantation” are “not a big deal,” he \u003ca href=\"https://twitter.com/HankGreelyLSJU/status/890371791947833344\">argued\u003c/a>.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>This \u003ca href=\"https://www.statnews.com/2017/07/26/human-embryos-edited/\" target=\"_blank\" rel=\"noopener noreferrer\">story\u003c/a> has been updated with additional comments by experts and details of similar experiments. It \u003c/em>\u003cem>was originally published by STAT, an online publication of Boston Globe Media that covers health, medicine and scientific discovery.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>A South African girl born with the AIDS virus has kept her infection suppressed for more than eight years after stopping anti-HIV medicines — more evidence that early treatment can occasionally cause a long remission that, if it lasts, would be a form of cure.\u003c/p>\n\u003cp>Her case was revealed Monday at an \u003ca href=\"http://www.aidsinfo.nih.gov/\">AIDS\u003c/a> conference in Paris, where researchers also gave encouraging results from tests of shots every month or two instead of daily pills to treat HIV.\u003c/p>\n\u003cp>“That’s very promising” to help people stay on treatment, the U.S.’s top AIDS scientist, Dr. Anthony Fauci, said of the prospects for long-acting drugs.\u003c/p>\n\u003cp>Current treatments keep \u003ca href=\"http://medlineplus.gov/hivaids.html\">HIV\u003c/a> under control but must be taken lifelong. Only one person is thought to be cured — the so-called Berlin patient, a man who had a bone marrow transplant in 2007 from a donor with natural resistance to HIV.\u003c/p>\n\u003cp>But transplants are risky and impractical to try to cure the millions already infected. So some researchers have been aiming for the next best thing — long-term remission, when the immune system can control HIV without drugs even if signs of the virus remain.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Aggressive treatment soon after infection might enable that in some cases, and the South African girl is the third child who achieved a long remission after that approach.\u003c/p>\n\u003cp>She was in a \u003ca href=\"http://clinicaltrials.gov/ct2/show/NCT02788175\">study\u003c/a> sponsored by the agency Fauci heads, the National Institute of Allergy and Infectious Diseases, that previously found that early versus delayed treatment helped babies survive.\u003c/p>\n\u003cp>The girl, who researchers did not identify, started on HIV drugs when she was 2 months old and stopped 40 weeks later. Tests when she was 9 1/2 years old found signs of virus in a small number of immune system cells, but none capable of reproducing. The girl does not have a gene mutation that gives natural resistance to HIV infection, Fauci said, so her remission seems likely due to the early treatment.\u003c/p>\n\u003cp>The previous cases:\u003c/p>\n\u003cp>—A French teen who was born with HIV and is now around 20 has had her infection under control despite no HIV medicines since she was roughly 6 years old.\u003c/p>\n\u003cp>—A Mississippi baby born with HIV in 2010 suppressed her infection for 27 months after stopping treatment before it reappeared in her blood. She was able to get the virus under control again after treatment resumed.\u003c/p>\n\u003cp>At least a dozen adults also have had remissions lasting for years after stopping HIV medicines.\u003c/p>\n\u003cp>A study underway now is testing whether treating HIV-infected newborns within two days of birth can control the virus later after treatment stops. It started in 2014 in South America, Haiti, Africa and the United States, and some of the earliest participants might be able to try stopping treatment later this year.\u003c/p>\n\u003cp>Treatment might get easier if two large studies underway now confirm results reported Monday from a study testing a long-acting combo of two HIV drugs — Janssen’s rilpivirine and ViiV Healthcare’s cabotegravir.\u003c/p>\n\u003cp>Cabotegravir is experimental; rilpivirine is sold now as Edurant and used in combination with other drugs for treating certain types of HIV patients.\u003c/p>\n\u003cp>After initial treatment to get their virus under control, about 300 study participants were given either daily combination therapy pills or a shot every four or eight weeks of the long-acting drug duo to maintain control.\u003c/p>\n\u003cp>After nearly two years, 94 percent on eight-week shots, 87 percent on four-week shots and 84 percent on daily pills had their infections suppressed, with similar rates of side effects.\u003c/p>\n\u003cp>“The results were good regardless of whether people came monthly or every two months for their treatment. This has important policy implications,” said Dr. Linda-Gail Bekker, deputy director of the Desmond Tutu HIV Centre at the University of Cape Town in South Africa, and a co-leader of the conference.\u003c/p>\n\u003cp>The study was sponsored by the drugmakers. Results were published in the British medical journal \u003ca href=\"http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)31917-7/fulltext?elsca1=tlpr\">Lancet.\u003c/a>\u003c/p>\n\u003cp>Two large studies aimed at winning approval to sell the treatment are testing the monthly shots. Janssen said in a statement that good results from eight-week shots warrant reconsidering the longer approach.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>If it works, “this will have a huge impact on how we manage that very important group of people who are not able to access and take drugs on a day-to-day basis,” such as those with mental health or drug abuse problems, said Dr. Steven Deeks, an AIDS specialist at the University of California, San Francisco.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>A South African girl born with the AIDS virus has kept her infection suppressed for more than eight years after stopping anti-HIV medicines — more evidence that early treatment can occasionally cause a long remission that, if it lasts, would be a form of cure.\u003c/p>\n\u003cp>Her case was revealed Monday at an \u003ca href=\"http://www.aidsinfo.nih.gov/\">AIDS\u003c/a> conference in Paris, where researchers also gave encouraging results from tests of shots every month or two instead of daily pills to treat HIV.\u003c/p>\n\u003cp>“That’s very promising” to help people stay on treatment, the U.S.’s top AIDS scientist, Dr. Anthony Fauci, said of the prospects for long-acting drugs.\u003c/p>\n\u003cp>Current treatments keep \u003ca href=\"http://medlineplus.gov/hivaids.html\">HIV\u003c/a> under control but must be taken lifelong. Only one person is thought to be cured — the so-called Berlin patient, a man who had a bone marrow transplant in 2007 from a donor with natural resistance to HIV.\u003c/p>\n\u003cp>But transplants are risky and impractical to try to cure the millions already infected. So some researchers have been aiming for the next best thing — long-term remission, when the immune system can control HIV without drugs even if signs of the virus remain.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Aggressive treatment soon after infection might enable that in some cases, and the South African girl is the third child who achieved a long remission after that approach.\u003c/p>\n\u003cp>She was in a \u003ca href=\"http://clinicaltrials.gov/ct2/show/NCT02788175\">study\u003c/a> sponsored by the agency Fauci heads, the National Institute of Allergy and Infectious Diseases, that previously found that early versus delayed treatment helped babies survive.\u003c/p>\n\u003cp>The girl, who researchers did not identify, started on HIV drugs when she was 2 months old and stopped 40 weeks later. Tests when she was 9 1/2 years old found signs of virus in a small number of immune system cells, but none capable of reproducing. The girl does not have a gene mutation that gives natural resistance to HIV infection, Fauci said, so her remission seems likely due to the early treatment.\u003c/p>\n\u003cp>The previous cases:\u003c/p>\n\u003cp>—A French teen who was born with HIV and is now around 20 has had her infection under control despite no HIV medicines since she was roughly 6 years old.\u003c/p>\n\u003cp>—A Mississippi baby born with HIV in 2010 suppressed her infection for 27 months after stopping treatment before it reappeared in her blood. She was able to get the virus under control again after treatment resumed.\u003c/p>\n\u003cp>At least a dozen adults also have had remissions lasting for years after stopping HIV medicines.\u003c/p>\n\u003cp>A study underway now is testing whether treating HIV-infected newborns within two days of birth can control the virus later after treatment stops. It started in 2014 in South America, Haiti, Africa and the United States, and some of the earliest participants might be able to try stopping treatment later this year.\u003c/p>\n\u003cp>Treatment might get easier if two large studies underway now confirm results reported Monday from a study testing a long-acting combo of two HIV drugs — Janssen’s rilpivirine and ViiV Healthcare’s cabotegravir.\u003c/p>\n\u003cp>Cabotegravir is experimental; rilpivirine is sold now as Edurant and used in combination with other drugs for treating certain types of HIV patients.\u003c/p>\n\u003cp>After initial treatment to get their virus under control, about 300 study participants were given either daily combination therapy pills or a shot every four or eight weeks of the long-acting drug duo to maintain control.\u003c/p>\n\u003cp>After nearly two years, 94 percent on eight-week shots, 87 percent on four-week shots and 84 percent on daily pills had their infections suppressed, with similar rates of side effects.\u003c/p>\n\u003cp>“The results were good regardless of whether people came monthly or every two months for their treatment. This has important policy implications,” said Dr. Linda-Gail Bekker, deputy director of the Desmond Tutu HIV Centre at the University of Cape Town in South Africa, and a co-leader of the conference.\u003c/p>\n\u003cp>The study was sponsored by the drugmakers. Results were published in the British medical journal \u003ca href=\"http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)31917-7/fulltext?elsca1=tlpr\">Lancet.\u003c/a>\u003c/p>\n\u003cp>Two large studies aimed at winning approval to sell the treatment are testing the monthly shots. Janssen said in a statement that good results from eight-week shots warrant reconsidering the longer approach.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>If it works, “this will have a huge impact on how we manage that very important group of people who are not able to access and take drugs on a day-to-day basis,” such as those with mental health or drug abuse problems, said Dr. Steven Deeks, an AIDS specialist at the University of California, San Francisco.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Is There a Direct Link Between the Sense of Smell and Obesity?",
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"content": "\u003cp>Molecular biologist Celine Riera was walking down a street in France earlier this month when she smelled freshly baked croissants.\u003c/p>\n\u003cp>“I wasn’t hungry,” she says, “but I had to have one.”\u003c/p>\n\u003cp>Riera’s scent cells began sending a message to her body: “Hey, Celine, you’re about to eat food. Get ready to store it as fat to use later.”\u003c/p>\n\u003caside class=\"pullquote alignright\">'It wasn’t known that the sense of smell was actually driving metabolic rate.'\u003ccite>Andrew Dillin, UC Berkeley\u003c/cite>\u003c/aside>\n\u003cp>But what if her scent cells never sent that signal? Is it possible she could eat that croissant and perhaps not store it as fat? Does our sense of smell direct our body’s decisions on when to store fat and when to burn it?\u003c/p>\n\u003cp>Riera’s latest research offers a start to answering just that.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Riera is the lead author on a study released this month from UC Berkeley’s Dillin Lab and published in Cell Metabolism. It found that mice who lost their sense of smell burned more energy and fat while eating the same amount of food as mice who could smell just fine.\u003c/p>\n\u003cp>\u003cstrong>Same Diet, Two Results\u003c/strong>\u003c/p>\n\u003cp>The study tested two groups of mice that had been genetically modified to be susceptible to diphtheria in the sensory receptors in their noses. Researchers injected one group with the diphtheria toxin, temporarily wiping out their sense of smell. Both groups of mice were then fed a high-fat diet. After 12 weeks, the mice who could smell weighed 16 percent more than those who couldn’t. And the difference was made up entirely of fat.\u003c/p>\n\u003cp>[contextly_sidebar id=\"ZCpjW5Z35Z4t8PosUMPhGWqsT1kZErLP\"]The mice who couldn’t smell also seemed to be protected from other consequences of high-fat diets, such as inflammation in fat tissues, and insulin resistance that can lead to diabetes.\u003c/p>\n\u003cp>In a second experiment, researchers allowed a group of mice with typical smell to eat a high-fat diet, then injected half of the obese mice with diphtheria toxin. After they lost their sense of smell, these mice lost weight and showed less insulin resistance.\u003c/p>\n\u003cfigure id=\"attachment_428936\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-428936 size-medium\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/07/best-immunos-MOE-2-800x393.jpg\" alt=\"On the left is a close-up of the inside of the nose of a mouse who can smell, while the right is a mouse who can't.\" width=\"800\" height=\"393\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/07/best-immunos-MOE-2-800x393.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/best-immunos-MOE-2-160x79.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/best-immunos-MOE-2-768x378.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/best-immunos-MOE-2-240x118.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/best-immunos-MOE-2-375x184.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/best-immunos-MOE-2-520x256.jpg 520w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/best-immunos-MOE-2.jpg 952w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">To test the effects of smell on weight gain, researchers knocked out the olfactory neurons (stained in red) of mice before feeding them a high-fat diet. On the left is a close-up of the inside of the nose of a mouse who can smell, while the right is a mouse who can't. \u003ccite>(Andrew Dillin and Celine Riera/UC Berkeley)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>In both experiments, the mice that couldn’t smell weren’t eating less, nor were they more physically active.\u003c/p>\n\u003cp>So why were the mice who couldn’t smell expending more energy? Researchers say the answer has to do with a link between scent and metabolism.\u003c/p>\n\u003cp>\u003cstrong>The Link Between Scent and Metabolism\u003c/strong>\u003c/p>\n\u003cp>“We know that smell was integrated with us eating,” says Andrew Dillin, professor of molecular and cell biology at UC Berkeley and head of the Dillin Lab. “It wasn’t known that the sense of smell was actually driving metabolic rate.”\u003c/p>\n\u003cp>In other words, research had already established that when we’re hungry, our body sends out hormones and other signals that turn up our sense of smell so we can more find food more easily, dulling it once we’re well-fed.\u003c/p>\n\u003caside class=\"pullquote alignright\">Maybe interfering with the sense of smell can offer an obesity treatment that's less invasive than weight-loss surgery.\u003c/aside>\n\u003cp>What Riera and colleagues discovered is that when we smell food, the scent also sets in motion a chain reaction of nerves, hormones and physiological functions that change our metabolism and tell our bodies to store the food we’re about to eat.\u003c/p>\n\u003cp>The mice who couldn’t smell showed signs of a revved-up metabolism and their energy-storing white fat was turning to brown fat, which is easier to burn. These clues led researchers to find that these mice had far more noradrenaline in their systems. Noradrenaline is one of those chemicals that makes you feel that “adrenaline rush.”\u003c/p>\n\u003cp>It turns out, knocking out the mice’s sense of smell sends a signal to the hypothalamus - the part of the brain that regulates metabolism - to activate the sympathetic nervous system. The sympathetic nervous system regulates the “fight, flight or freeze,” response, and it was causing the mice to burn more energy and fat.\u003c/p>\n\u003cp>\u003cstrong>Unanswered Questions\u003c/strong>\u003c/p>\n\u003cp>Dr. Robert Lustig, a professor of pediatrics in the Division of Endocrinology at UC San Francisco says he hasn’t seen any previous study demonstrate this link between smell and metabolism, but that when he saw it, he thought, “Well, that makes sense.”\u003c/p>\n\u003cp>Lustig researches metabolic disorders -- specifically, how the hypothalamus plays a role in obesity.\u003c/p>\n\u003cp>What’s novel about Riera’s study, he says, is that it provides experimental evidence that, at least in mice, there’s a direct link between smell and metabolism, resulting in weight gain or loss.\u003c/p>\n\u003cp>Lustig believes the pathway between smelling your food and gaining weight, at least in humans, probably goes through a cranial nerve called the vagus nerve.\u003c/p>\n\u003cp>“We know that smell activates the vagus nerve,” he says. “We know activating vagus nerve increases the amount of insulin. What we don’t know in humans is that the whole pathway is connected.”\u003c/p>\n\u003cp>Lustig says that question remains unanswered, and that the UC Berkeley study doesn’t examine whether the vagus nerve is involved.\u003c/p>\n\u003cp>\u003cstrong>Can This Help Humans?\u003c/strong>\u003c/p>\n\u003cp>So far, the link between smell and metabolism is confined to mice. It also only applies to preventing severe weight gain or facilitating weight loss in mice who are already obese. There's no evidence that knocking out the sense of smell affects the weight of average mice.\u003c/p>\n\u003cp>Riera, having completed her post-doctoral work at Berkeley, has just opened her own lab at Cedars-Sinai Medical Center in Los Angeles, where she plans to continue her work in mice and, perhaps someday, expand upon it in clinical research with humans.\u003c/p>\n\u003cp>She hopes to look at how these findings can be integrated into treatment for food addiction and binge-eating among some people with obesity. Maybe, Riera says, interfering with sense of smell can offer an obesity treatment that steps in to inhibit the food addiction, and does so in a manner less invasive than weight-loss surgery. So far, there isn’t a treatment that safely blocks smell for humans, but Riera believes the nose may hold the key to treating obesity.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>“We think that with olfaction we find maybe a milder way to do that,” she says. “Maybe if you can find a way to block the olfactory input, it would help.”\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Molecular biologist Celine Riera was walking down a street in France earlier this month when she smelled freshly baked croissants.\u003c/p>\n\u003cp>“I wasn’t hungry,” she says, “but I had to have one.”\u003c/p>\n\u003cp>Riera’s scent cells began sending a message to her body: “Hey, Celine, you’re about to eat food. Get ready to store it as fat to use later.”\u003c/p>\n\u003caside class=\"pullquote alignright\">'It wasn’t known that the sense of smell was actually driving metabolic rate.'\u003ccite>Andrew Dillin, UC Berkeley\u003c/cite>\u003c/aside>\n\u003cp>But what if her scent cells never sent that signal? Is it possible she could eat that croissant and perhaps not store it as fat? Does our sense of smell direct our body’s decisions on when to store fat and when to burn it?\u003c/p>\n\u003cp>Riera’s latest research offers a start to answering just that.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Riera is the lead author on a study released this month from UC Berkeley’s Dillin Lab and published in Cell Metabolism. It found that mice who lost their sense of smell burned more energy and fat while eating the same amount of food as mice who could smell just fine.\u003c/p>\n\u003cp>\u003cstrong>Same Diet, Two Results\u003c/strong>\u003c/p>\n\u003cp>The study tested two groups of mice that had been genetically modified to be susceptible to diphtheria in the sensory receptors in their noses. Researchers injected one group with the diphtheria toxin, temporarily wiping out their sense of smell. Both groups of mice were then fed a high-fat diet. After 12 weeks, the mice who could smell weighed 16 percent more than those who couldn’t. And the difference was made up entirely of fat.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>The mice who couldn’t smell also seemed to be protected from other consequences of high-fat diets, such as inflammation in fat tissues, and insulin resistance that can lead to diabetes.\u003c/p>\n\u003cp>In a second experiment, researchers allowed a group of mice with typical smell to eat a high-fat diet, then injected half of the obese mice with diphtheria toxin. After they lost their sense of smell, these mice lost weight and showed less insulin resistance.\u003c/p>\n\u003cfigure id=\"attachment_428936\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"wp-image-428936 size-medium\" src=\"https://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/07/best-immunos-MOE-2-800x393.jpg\" alt=\"On the left is a close-up of the inside of the nose of a mouse who can smell, while the right is a mouse who can't.\" width=\"800\" height=\"393\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2017/07/best-immunos-MOE-2-800x393.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/best-immunos-MOE-2-160x79.jpg 160w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/best-immunos-MOE-2-768x378.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/best-immunos-MOE-2-240x118.jpg 240w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/best-immunos-MOE-2-375x184.jpg 375w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/best-immunos-MOE-2-520x256.jpg 520w, https://ww2.kqed.org/app/uploads/sites/13/2017/07/best-immunos-MOE-2.jpg 952w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">To test the effects of smell on weight gain, researchers knocked out the olfactory neurons (stained in red) of mice before feeding them a high-fat diet. On the left is a close-up of the inside of the nose of a mouse who can smell, while the right is a mouse who can't. \u003ccite>(Andrew Dillin and Celine Riera/UC Berkeley)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>In both experiments, the mice that couldn’t smell weren’t eating less, nor were they more physically active.\u003c/p>\n\u003cp>So why were the mice who couldn’t smell expending more energy? Researchers say the answer has to do with a link between scent and metabolism.\u003c/p>\n\u003cp>\u003cstrong>The Link Between Scent and Metabolism\u003c/strong>\u003c/p>\n\u003cp>“We know that smell was integrated with us eating,” says Andrew Dillin, professor of molecular and cell biology at UC Berkeley and head of the Dillin Lab. “It wasn’t known that the sense of smell was actually driving metabolic rate.”\u003c/p>\n\u003cp>In other words, research had already established that when we’re hungry, our body sends out hormones and other signals that turn up our sense of smell so we can more find food more easily, dulling it once we’re well-fed.\u003c/p>\n\u003caside class=\"pullquote alignright\">Maybe interfering with the sense of smell can offer an obesity treatment that's less invasive than weight-loss surgery.\u003c/aside>\n\u003cp>What Riera and colleagues discovered is that when we smell food, the scent also sets in motion a chain reaction of nerves, hormones and physiological functions that change our metabolism and tell our bodies to store the food we’re about to eat.\u003c/p>\n\u003cp>The mice who couldn’t smell showed signs of a revved-up metabolism and their energy-storing white fat was turning to brown fat, which is easier to burn. These clues led researchers to find that these mice had far more noradrenaline in their systems. Noradrenaline is one of those chemicals that makes you feel that “adrenaline rush.”\u003c/p>\n\u003cp>It turns out, knocking out the mice’s sense of smell sends a signal to the hypothalamus - the part of the brain that regulates metabolism - to activate the sympathetic nervous system. The sympathetic nervous system regulates the “fight, flight or freeze,” response, and it was causing the mice to burn more energy and fat.\u003c/p>\n\u003cp>\u003cstrong>Unanswered Questions\u003c/strong>\u003c/p>\n\u003cp>Dr. Robert Lustig, a professor of pediatrics in the Division of Endocrinology at UC San Francisco says he hasn’t seen any previous study demonstrate this link between smell and metabolism, but that when he saw it, he thought, “Well, that makes sense.”\u003c/p>\n\u003cp>Lustig researches metabolic disorders -- specifically, how the hypothalamus plays a role in obesity.\u003c/p>\n\u003cp>What’s novel about Riera’s study, he says, is that it provides experimental evidence that, at least in mice, there’s a direct link between smell and metabolism, resulting in weight gain or loss.\u003c/p>\n\u003cp>Lustig believes the pathway between smelling your food and gaining weight, at least in humans, probably goes through a cranial nerve called the vagus nerve.\u003c/p>\n\u003cp>“We know that smell activates the vagus nerve,” he says. “We know activating vagus nerve increases the amount of insulin. What we don’t know in humans is that the whole pathway is connected.”\u003c/p>\n\u003cp>Lustig says that question remains unanswered, and that the UC Berkeley study doesn’t examine whether the vagus nerve is involved.\u003c/p>\n\u003cp>\u003cstrong>Can This Help Humans?\u003c/strong>\u003c/p>\n\u003cp>So far, the link between smell and metabolism is confined to mice. It also only applies to preventing severe weight gain or facilitating weight loss in mice who are already obese. There's no evidence that knocking out the sense of smell affects the weight of average mice.\u003c/p>\n\u003cp>Riera, having completed her post-doctoral work at Berkeley, has just opened her own lab at Cedars-Sinai Medical Center in Los Angeles, where she plans to continue her work in mice and, perhaps someday, expand upon it in clinical research with humans.\u003c/p>\n\u003cp>She hopes to look at how these findings can be integrated into treatment for food addiction and binge-eating among some people with obesity. Maybe, Riera says, interfering with sense of smell can offer an obesity treatment that steps in to inhibit the food addiction, and does so in a manner less invasive than weight-loss surgery. So far, there isn’t a treatment that safely blocks smell for humans, but Riera believes the nose may hold the key to treating obesity.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"tagline": "Where conversation and cultura meet",
"info": "What kind of no sabo word is Hyphenación? For us, it’s about living within a hyphenation. Like being a third-gen Mexican-American from the Texas border now living that Bay Area Chicano life. Like Xorje! Each week we bring together a couple of hyphenated Latinos to talk all about personal life choices: family, careers, relationships, belonging … everything is on the table. ",
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"info": "The Political Mind of Jerry Brown brings listeners the wisdom of the former Governor, Mayor, and presidential candidate. Scott Shafer interviewed Brown for more than 40 hours, covering the former governor's life and half-century in the political game – and Brown has some lessons he'd like to share. ",
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"marketplace": {
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"info": "Our flagship program, helmed by Kai Ryssdal, examines what the day in money delivered, through stories, conversations, newsworthy numbers and more. Updated Monday through Friday at about 3:30 p.m. PT.",
"airtime": "MON-FRI 4pm-4:30pm, MON-WED 6:30pm-7pm",
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"info": "The MindShift podcast explores the innovations in education that are shaping how kids learn. Hosts Ki Sung and Katrina Schwartz introduce listeners to educators, researchers, parents and students who are developing effective ways to improve how kids learn. We cover topics like how fed-up administrators are developing surprising tactics to deal with classroom disruptions; how listening to podcasts are helping kids develop reading skills; the consequences of overparenting; and why interdisciplinary learning can engage students on all ends of the traditional achievement spectrum. This podcast is part of the MindShift education site, a division of KQED News. KQED is an NPR/PBS member station based in San Francisco. You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>",
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"info": "For decades, the process for how police police themselves has been inconsistent – if not opaque. In some states, like California, these proceedings were completely hidden. After a new police transparency law unsealed scores of internal affairs files, our reporters set out to examine these cases and the shadow world of police discipline. On Our Watch brings listeners into the rooms where officers are questioned and witnesses are interrogated to find out who this system is really protecting. Is it the officers, or the public they've sworn to serve?",
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"info": "Our weekly podcast explores how the media 'sausage' is made, casts an incisive eye on fluctuations in the marketplace of ideas, and examines threats to the freedom of information and expression in America and abroad. For one hour a week, the show tries to lift the veil from the process of \"making media,\" especially news media, because it's through that lens that we see the world and the world sees us",
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"planet-money": {
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"politicalbreakdown": {
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"title": "Political Breakdown",
"tagline": "Politics from a personal perspective",
"info": "Political Breakdown is a new series that explores the political intersection of California and the nation. Each week hosts Scott Shafer and Marisa Lagos are joined with a new special guest to unpack politics -- with personality — and offer an insider’s glimpse at how politics happens.",
"airtime": "THU 6:30pm-7pm",
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"possible": {
"id": "possible",
"title": "Possible",
"info": "Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? Each episode also includes a short fiction story generated by advanced AI GPT-4, serving as a thought-provoking springboard to speculate how humanity could leverage technology for good.",
"airtime": "SUN 2pm",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Possible-Podcast-Tile-360x360-1.jpg",
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"pri-the-world": {
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"title": "PRI's The World: Latest Edition",
"info": "Each weekday, host Marco Werman and his team of producers bring you the world's most interesting stories in an hour of radio that reminds us just how small our planet really is.",
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"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/The-World-Podcast-Tile-360x360-1.jpg",
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},
"radiolab": {
"id": "radiolab",
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"info": "A two-time Peabody Award-winner, Radiolab is an investigation told through sounds and stories, and centered around one big idea. In the Radiolab world, information sounds like music and science and culture collide. Hosted by Jad Abumrad and Robert Krulwich, the show is designed for listeners who demand skepticism, but appreciate wonder. WNYC Studios is the producer of other leading podcasts including Freakonomics Radio, Death, Sex & Money, On the Media and many more.",
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"reveal": {
"id": "reveal",
"title": "Reveal",
"info": "Created by The Center for Investigative Reporting and PRX, Reveal is public radios first one-hour weekly radio show and podcast dedicated to investigative reporting. Credible, fact based and without a partisan agenda, Reveal combines the power and artistry of driveway moment storytelling with data-rich reporting on critically important issues. The result is stories that inform and inspire, arming our listeners with information to right injustices, hold the powerful accountable and improve lives.Reveal is hosted by Al Letson and showcases the award-winning work of CIR and newsrooms large and small across the nation. In a radio and podcast market crowded with choices, Reveal focuses on important and often surprising stories that illuminate the world for our listeners.",
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"officialWebsiteLink": "https://www.revealnews.org/episodes/",
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},
"rightnowish": {
"id": "rightnowish",
"title": "Rightnowish",
"tagline": "Art is where you find it",
"info": "Rightnowish digs into life in the Bay Area right now… ish. Journalist Pendarvis Harshaw takes us to galleries painted on the sides of liquor stores in West Oakland. We'll dance in warehouses in the Bayview, make smoothies with kids in South Berkeley, and listen to classical music in a 1984 Cutlass Supreme in Richmond. Every week, Pen talks to movers and shakers about how the Bay Area shapes what they create, and how they shape the place we call home.",
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"order": 16
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},
"science-friday": {
"id": "science-friday",
"title": "Science Friday",
"info": "Science Friday is a weekly science talk show, broadcast live over public radio stations nationwide. Each week, the show focuses on science topics that are in the news and tries to bring an educated, balanced discussion to bear on the scientific issues at hand. Panels of expert guests join host Ira Flatow, a veteran science journalist, to discuss science and to take questions from listeners during the call-in portion of the program.",
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},
"snap-judgment": {
"id": "snap-judgment",
"title": "Snap Judgment",
"tagline": "Real stories with killer beats",
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