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"content": "\u003cp>For a long time, Daniel Au Valencia got the message that she was wrong, wrong, wrong. She stood wrong. She talked wrong. She looked at people wrong.\u003c/p>\n\u003cp>“There’s a lot of shame around autism,” she says. “There’s a lot of being told you look weird.”\u003c/p>\n\u003cp>\u003ca href=\"http://actingnt.blogspot.com/\">Valencia\u003c/a>, 22, often taps her feet when talking to someone. Or she’ll flap her hands. She says those movements help her communicate emotions and stay calm.\u003c/p>\n\u003caside class=\"alignright\">\u003ca href=\"#note\">A note on pronouns\u003c/a>\u003c/aside>\n\u003cp>“A common question is, ‘Why are you doing that?' in a very accusatory tone,” she says.\u003c/p>\n\u003cp>Don't even get her started on eye contact. A social skills teacher once tried to show her how to make eye contact without making people uncomfortable.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Don’t avoid it, but don’t stare.\u003c/p>\n\u003cp>“What I would have to do is, \"Okay, eye contact. One, two, three, glance away, glance back. One, two, three, glance away,’” Valencia explains. “And at that point, I’m no longer listening, I am pretending to listen.”\u003c/p>\n\u003cp>A lot of people just walk away.\u003c/p>\n\u003cp>“It can be anxiety-provoking,” she says. “That anxiety comes from being excluded, being rejected, being ridiculed for things that are just part of naturally being me.”\u003c/p>\n\u003cp>Valencia likes hanging out with people. She’s into salsa dancing, acting, improv and Pokemon Go. But sometimes social situations can be so stressful that Valencia hangs back on the sidelines, or avoids them altogether. She never answers the phone.\u003c/p>\n\u003cp>“It creates a cycle of self-judgment,” she says, “and makes the anxiety worse.”\u003c/p>\n\u003cfigure id=\"attachment_266972\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_image-e1477009038956.jpg\">\u003cimg class=\"wp-image-266972 size-large\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_image-1020x791.jpg\" alt=\"MDMA_image\" width=\"640\" height=\"496\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Daniel Au Valencia participated in a pilot study examining the potential of MDMA as a treatment for social anxiety in autistic adults. \u003ccite>(April Dembosky/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Experimental Study\u003c/strong>\u003c/p>\n\u003cp>Then last year Valencia heard about an unusual experimental study. Unlike a lot of other studies, this one didn’t say anything about trying to “cure autism.” This one was exploring a treatment specifically for social anxiety in autistic adults.\u003c/p>\n\u003cp>“Anxiety, unlike autism, is actually a problem that you might want to get rid of,” Valencia says.\u003c/p>\n\u003cp>Many traditional therapies don’t work for autistic people, says Nick Walker, an autistic advocate and consultant on the new study, because they reinforce stigma around autism and are “designed to coerce autistic people into acting like they’re not autistic.”\u003c/p>\n\u003cp>He sees this new research as a uniquely “culturally appropriate” approach to addressing the “epidemic” of social anxiety in autistic adults – anxiety caused by a lifetime of repeated, traumatic social interactions.\u003c/p>\n\u003cp>The treatment is MDMA, known more commonly as Ecstacy or Molly. On the street, it is often cut with speed or other drugs, and is popular among ravers for lowering inhibitions, heightening physical sensations, and making people feel all lovey.\u003c/p>\n\u003cp>But researchers are finding that pure MDMA has potential to be a true medicine. Early studies backed by MAPS, the Multidisciplinary Association of Psychedelic Studies based in Santa Cruz, show it can ease or erase symptoms of post-traumatic stress disorder. In \u003ca href=\"http://www.maps.org/research-archive/publications/Oehen_2012_MDMA_PTSD_Swisstudy.pdf\">one study\u003c/a>, 83 percent of study participants treated with MDMA and psychotherapy were cured of their PTSD, compared to 25 percent who were cured from talk therapy alone.\u003c/p>\n\u003cp>“MDMA creates a sensation of feeling safe,” says psychologist \u003ca href=\"http://www.icpr2016.nl/speakers/alicia-danforth-phd/\">Alicia Danforth\u003c/a>, one of the researchers conducting the social anxiety study at UCLA’s Los Angeles Biomedical Research Institute, along with psychiatrist \u003ca href=\"http://www.harboruclapsych.com/charles-s-grob-m-d/\">Charles Grob\u003c/a>.\u003c/p>\n\u003caside class=\"pullquote alignright\">'I felt the changes in my body. My bodily needs were radically altered.'\u003ccite>Daniel Au Valencia, Study participant\u003c/cite>\u003c/aside>\n\u003cp>MDMA floods the brain with serotonin and dopamine, they say, and quiets the fear response from the amygdala, allowing people to confront past traumatic experiences without becoming overwhelmed. Or they can try new things without fear or inhibition getting in the way.\u003c/p>\n\u003cp>“It creates a practice environment to try different social skills out,” Danforth says. “MDMA can be a bit like training wheels for the psyche.”\u003c/p>\n\u003cp>Valencia is one of just 12 autistic adults participating in the pilot study. Given the small size, researchers won’t get statistically meaningful data on the efficacy of MDMA in treating social anxiety. Their focus is proving that this research can be done safely in this population, with the hopes that others will conduct larger-scale studies.\u003c/p>\n\u003cp>The treatment consists of two MDMA sessions, 10 a.m. to 6 p.m., six weeks apart. Danforth and Grob meet with each study participant several times before and after each session for psychotherapy and to measure their social anxiety levels.\u003c/p>\n\u003cp>Before the first MDMA session, they ask participants to set an intention. Danforth says they want them to think about how they hope to grow or change from the treatment.\u003c/p>\n\u003cp>“It can be something simple: ‘I want to be better at small talk, or I want to learn the skill of asking someone out on a date,’” Danforth says. “It can also be very large, ‘I’m working on forgiveness or unresolved grief or loss.’”\u003c/p>\n\u003cp>Valencia’s goal was to be more assertive.\u003c/p>\n\u003cp>“One of the things that makes anxiety go away is to be in control of the situation rather than waiting for things to happen,” she says.\u003c/p>\n\u003cp>\u003cstrong>The First Session\u003c/strong>\u003c/p>\n\u003cp>Valencia arrived at 10 a.m. for her first MDMA session at a bland office building on the UCLA campus. Researchers transformed the room to a kind of den that Danforth describes as “autism friendly” -- soft lighting, soothing colors, and a luxury leather recliner facing a wall-sized poster of a forest canopy with light streaming through the trees.\u003c/p>\n\u003cp>New-age flute music played over the computer speakers as Valencia swallowed the MDMA capsule. Within a half hour, she knew it was not a placebo.\u003c/p>\n\u003cp>“I felt the changes in my body,” Valencia describes. “My bodily needs were radically altered.”\u003c/p>\n\u003cp>She describes one moment that was particularly powerful, when researchers brought in a plate of grapes.\u003c/p>\n\u003cp>“I bit into half a grape,” Valencia says. “I felt the flavors, the texture, the nuance.”\u003c/p>\n\u003cp>This sparked a classic psychedelic epiphany.\u003c/p>\n\u003cp>“Wow, I can really enjoy every bit of life more, if I can do it mindfully,” she says.\u003c/p>\n\u003cp>Later in the session, she felt a rush of energy in her body and said, “I feel like dancing.”\u003c/p>\n\u003cp>Then Valencia did something that would normally take her eons to build up the courage to do.\u003c/p>\n\u003cp>She asked Danforth if she would care to salsa.\u003c/p>\n\u003cp>“I was thinking, my intention is to be more assertive,” Valencia says. “Well, one part of being assertive is ask for what you want.”\u003c/p>\n\u003cp>Danforth says in the context of the therapy and Valencia’s intention, this was completely appropriate. It was in keeping with Danforth’s previous research, where she collected qualitative reports from autistic adults who had taken MDMA recreationally.\u003c/p>\n\u003cp>“We call them the Five C’s,” she says. “People reported changes in their level of courage or confidence, communication, feeling connected, a sense of communion or belonging, and mental clarity.”\u003c/p>\n\u003cfigure id=\"attachment_266943\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_1-e1477009669302.jpg\">\u003cimg class=\"size-large wp-image-266943\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_1-1020x765.jpg\" alt='Valencia uses emotion cards to help her understand and articulate her feelings. There are about 60 in the deck, including a few \"make your own\" cards.' width=\"640\" height=\"480\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Valencia uses emotion cards to help her understand and articulate her feelings. There are about 60 in the deck, including a few \"make your own\" cards. \u003ccite>(April Dembosky/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Follow-Up\u003c/strong>\u003c/p>\n\u003cp>The day after the MDMA session, the researchers meet with each participant to talk about what happened. Then they call them every day for a week after that to check in.\u003c/p>\n\u003cp>“The treatment is just a day,” Danforth says. “It’s what you do with those insights and how you integrate it into your everyday life.”\u003c/p>\n\u003cp>After her first session, Valencia started using a deck of “emotion cards” each day to help her understand what she was feeling. Each card has a word – “peaceful,” “loving,” “uncomfortable,” “frustrated,” “receptive” -- with a corresponding illustration.\u003c/p>\n\u003cp>“I’ve learned about the importance of connecting with your emotions,” she says. “I have learned that you can experience a whole lot of different emotions at once.”\u003c/p>\n\u003cp>While that may seem innate for a lot of typically developing individuals, it’s novel for a lot of autistic people, Danforth says. MDMA is known for helping people get clarity about their feeling states, to find words to express them, she says. That, in turn, helps people articulate their needs so they can “shape the world to be more to their liking.”\u003c/p>\n\u003cp>That was one of Valencia’s big takeaways: “Knowing that I have a choice,” she says. “Anytime something is bothering me, I can do something about it.”\u003c/p>\n\u003cp>\u003cstrong>The Second Session\u003c/strong>\u003c/p>\n\u003cp>When it was time for Valencia’s second MDMA session, she felt her original goal of being more assertive was now not quite right. It felt like a concession to societal pressure to fit in. She needed to let go of that, she says, and release the pressure she was putting on herself to always be involved, to be better all the time, to be different.\u003c/p>\n\u003cp>“In session number two, there was a moment I was just sitting in a big comfy chair,” Valencia says. “Letting my hands do whatever my hands wanted to do, kind of floating around. It looks like nothing is happening.”\u003c/p>\n\u003cp>But in fact, Valencia says, her mind was racing with thoughts, one idea popping up after another.\u003c/p>\n\u003cp>“And I thought, ‘Oh, these are some good ideas. I should write them down,” she says. “And then I stopped myself. ‘Do I have to do this? I can just sit here. And enjoy them.’”\u003c/p>\n\u003cp>When she flipped through the emotion cards, she picked one where the illustration was a swirl of blackness. The word was “depressed,” but Valencia says she saw something else.\u003c/p>\n\u003cp>“Not having to do something in every moment, not having to \u003cem>feel \u003c/em>anything for just a couple hours,” she says. “That was such a relief.”\u003c/p>\n\u003cp>\u003cstrong>Reflections \u003c/strong>\u003c/p>\n\u003cp>Valencia completed the treatment last year. It’s impossible to draw a direct line between the treatment and how Valencia is doing right now, but she says she’s doing great. She’s got a steady full-time job, her own apartment, and she just got married. The study is still ongoing, so Valencia won’t know if her scores on the social anxiety tests improved until all participants finish the treatment and the researchers analyze the data.\u003c/p>\n\u003cp>But she says her biggest takeaway from the experiment is more about emotions than social anxiety.\u003c/p>\n\u003cp>She says she’s learned that there’s no such thing as good emotions or bad emotions.\u003c/p>\n\u003cp>“All emotions deserve to exist,” she says.\u003c/p>\n\u003cp>This underscores a process of transformation Valencia started a couple years before the MDMA treatment around her autistic identity. She started reading essays by Nick Walker, the autism advocate based in Berkeley. He rejects the notion that autism is a disease, the same way the gay community rejects the notion that homosexuality is a disease.\u003c/p>\n\u003cp>Walker says autistic brains are simply different. They’re part of the patchwork of neurodiversity in the human population.\u003c/p>\n\u003cp>“There’s the dominant belief in society that there's good brains and bad brains,” Valencia says. “And from a neurodiversity perspective, all those concepts are no longer valid.”\u003c/p>\n\u003cp>After the MDMA treatment, Valencia started to see emotions in the same way, along the same continuum of self-acceptance.\u003c/p>\n\u003cp>“Once you do away with that most basic of dichotomies, good versus bad, and just make it all sort of a jumbled mess of the same thing, then you can either hate yourself as a whole or you can accept and love yourself as a whole,” she says. “And I think, it’s not always as easy as making a decision, but it’s pretty obvious which one is preferable.”\u003ca id=\"note\">\u003c/a>\u003c/p>\n\u003cp>\u003cem>Editor's Note:\u003c/em>\u003c/p>\n\u003cp>\u003cem>After completing the full course of MDMA treatment and working on assertiveness, Valencia began asking friends and acquaintances to use the pronouns “they, them, their.” Valencia identifies as gender-vague.\u003c/em>\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>Using “they” or “them” to refer to an individual presents certain grammatical and syntactical challenges, and in light of this, Valencia asked KQED to use female pronouns instead.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Don’t avoid it, but don’t stare.\u003c/p>\n\u003cp>“What I would have to do is, \"Okay, eye contact. One, two, three, glance away, glance back. One, two, three, glance away,’” Valencia explains. “And at that point, I’m no longer listening, I am pretending to listen.”\u003c/p>\n\u003cp>A lot of people just walk away.\u003c/p>\n\u003cp>“It can be anxiety-provoking,” she says. “That anxiety comes from being excluded, being rejected, being ridiculed for things that are just part of naturally being me.”\u003c/p>\n\u003cp>Valencia likes hanging out with people. She’s into salsa dancing, acting, improv and Pokemon Go. But sometimes social situations can be so stressful that Valencia hangs back on the sidelines, or avoids them altogether. She never answers the phone.\u003c/p>\n\u003cp>“It creates a cycle of self-judgment,” she says, “and makes the anxiety worse.”\u003c/p>\n\u003cfigure id=\"attachment_266972\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_image-e1477009038956.jpg\">\u003cimg class=\"wp-image-266972 size-large\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_image-1020x791.jpg\" alt=\"MDMA_image\" width=\"640\" height=\"496\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Daniel Au Valencia participated in a pilot study examining the potential of MDMA as a treatment for social anxiety in autistic adults. \u003ccite>(April Dembosky/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Experimental Study\u003c/strong>\u003c/p>\n\u003cp>Then last year Valencia heard about an unusual experimental study. Unlike a lot of other studies, this one didn’t say anything about trying to “cure autism.” This one was exploring a treatment specifically for social anxiety in autistic adults.\u003c/p>\n\u003cp>“Anxiety, unlike autism, is actually a problem that you might want to get rid of,” Valencia says.\u003c/p>\n\u003cp>Many traditional therapies don’t work for autistic people, says Nick Walker, an autistic advocate and consultant on the new study, because they reinforce stigma around autism and are “designed to coerce autistic people into acting like they’re not autistic.”\u003c/p>\n\u003cp>He sees this new research as a uniquely “culturally appropriate” approach to addressing the “epidemic” of social anxiety in autistic adults – anxiety caused by a lifetime of repeated, traumatic social interactions.\u003c/p>\n\u003cp>The treatment is MDMA, known more commonly as Ecstacy or Molly. On the street, it is often cut with speed or other drugs, and is popular among ravers for lowering inhibitions, heightening physical sensations, and making people feel all lovey.\u003c/p>\n\u003cp>But researchers are finding that pure MDMA has potential to be a true medicine. Early studies backed by MAPS, the Multidisciplinary Association of Psychedelic Studies based in Santa Cruz, show it can ease or erase symptoms of post-traumatic stress disorder. In \u003ca href=\"http://www.maps.org/research-archive/publications/Oehen_2012_MDMA_PTSD_Swisstudy.pdf\">one study\u003c/a>, 83 percent of study participants treated with MDMA and psychotherapy were cured of their PTSD, compared to 25 percent who were cured from talk therapy alone.\u003c/p>\n\u003cp>“MDMA creates a sensation of feeling safe,” says psychologist \u003ca href=\"http://www.icpr2016.nl/speakers/alicia-danforth-phd/\">Alicia Danforth\u003c/a>, one of the researchers conducting the social anxiety study at UCLA’s Los Angeles Biomedical Research Institute, along with psychiatrist \u003ca href=\"http://www.harboruclapsych.com/charles-s-grob-m-d/\">Charles Grob\u003c/a>.\u003c/p>\n\u003caside class=\"pullquote alignright\">'I felt the changes in my body. My bodily needs were radically altered.'\u003ccite>Daniel Au Valencia, Study participant\u003c/cite>\u003c/aside>\n\u003cp>MDMA floods the brain with serotonin and dopamine, they say, and quiets the fear response from the amygdala, allowing people to confront past traumatic experiences without becoming overwhelmed. Or they can try new things without fear or inhibition getting in the way.\u003c/p>\n\u003cp>“It creates a practice environment to try different social skills out,” Danforth says. “MDMA can be a bit like training wheels for the psyche.”\u003c/p>\n\u003cp>Valencia is one of just 12 autistic adults participating in the pilot study. Given the small size, researchers won’t get statistically meaningful data on the efficacy of MDMA in treating social anxiety. Their focus is proving that this research can be done safely in this population, with the hopes that others will conduct larger-scale studies.\u003c/p>\n\u003cp>The treatment consists of two MDMA sessions, 10 a.m. to 6 p.m., six weeks apart. Danforth and Grob meet with each study participant several times before and after each session for psychotherapy and to measure their social anxiety levels.\u003c/p>\n\u003cp>Before the first MDMA session, they ask participants to set an intention. Danforth says they want them to think about how they hope to grow or change from the treatment.\u003c/p>\n\u003cp>“It can be something simple: ‘I want to be better at small talk, or I want to learn the skill of asking someone out on a date,’” Danforth says. “It can also be very large, ‘I’m working on forgiveness or unresolved grief or loss.’”\u003c/p>\n\u003cp>Valencia’s goal was to be more assertive.\u003c/p>\n\u003cp>“One of the things that makes anxiety go away is to be in control of the situation rather than waiting for things to happen,” she says.\u003c/p>\n\u003cp>\u003cstrong>The First Session\u003c/strong>\u003c/p>\n\u003cp>Valencia arrived at 10 a.m. for her first MDMA session at a bland office building on the UCLA campus. Researchers transformed the room to a kind of den that Danforth describes as “autism friendly” -- soft lighting, soothing colors, and a luxury leather recliner facing a wall-sized poster of a forest canopy with light streaming through the trees.\u003c/p>\n\u003cp>New-age flute music played over the computer speakers as Valencia swallowed the MDMA capsule. Within a half hour, she knew it was not a placebo.\u003c/p>\n\u003cp>“I felt the changes in my body,” Valencia describes. “My bodily needs were radically altered.”\u003c/p>\n\u003cp>She describes one moment that was particularly powerful, when researchers brought in a plate of grapes.\u003c/p>\n\u003cp>“I bit into half a grape,” Valencia says. “I felt the flavors, the texture, the nuance.”\u003c/p>\n\u003cp>This sparked a classic psychedelic epiphany.\u003c/p>\n\u003cp>“Wow, I can really enjoy every bit of life more, if I can do it mindfully,” she says.\u003c/p>\n\u003cp>Later in the session, she felt a rush of energy in her body and said, “I feel like dancing.”\u003c/p>\n\u003cp>Then Valencia did something that would normally take her eons to build up the courage to do.\u003c/p>\n\u003cp>She asked Danforth if she would care to salsa.\u003c/p>\n\u003cp>“I was thinking, my intention is to be more assertive,” Valencia says. “Well, one part of being assertive is ask for what you want.”\u003c/p>\n\u003cp>Danforth says in the context of the therapy and Valencia’s intention, this was completely appropriate. It was in keeping with Danforth’s previous research, where she collected qualitative reports from autistic adults who had taken MDMA recreationally.\u003c/p>\n\u003cp>“We call them the Five C’s,” she says. “People reported changes in their level of courage or confidence, communication, feeling connected, a sense of communion or belonging, and mental clarity.”\u003c/p>\n\u003cfigure id=\"attachment_266943\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_1-e1477009669302.jpg\">\u003cimg class=\"size-large wp-image-266943\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/MDMA_1-1020x765.jpg\" alt='Valencia uses emotion cards to help her understand and articulate her feelings. There are about 60 in the deck, including a few \"make your own\" cards.' width=\"640\" height=\"480\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Valencia uses emotion cards to help her understand and articulate her feelings. There are about 60 in the deck, including a few \"make your own\" cards. \u003ccite>(April Dembosky/KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Follow-Up\u003c/strong>\u003c/p>\n\u003cp>The day after the MDMA session, the researchers meet with each participant to talk about what happened. Then they call them every day for a week after that to check in.\u003c/p>\n\u003cp>“The treatment is just a day,” Danforth says. “It’s what you do with those insights and how you integrate it into your everyday life.”\u003c/p>\n\u003cp>After her first session, Valencia started using a deck of “emotion cards” each day to help her understand what she was feeling. Each card has a word – “peaceful,” “loving,” “uncomfortable,” “frustrated,” “receptive” -- with a corresponding illustration.\u003c/p>\n\u003cp>“I’ve learned about the importance of connecting with your emotions,” she says. “I have learned that you can experience a whole lot of different emotions at once.”\u003c/p>\n\u003cp>While that may seem innate for a lot of typically developing individuals, it’s novel for a lot of autistic people, Danforth says. MDMA is known for helping people get clarity about their feeling states, to find words to express them, she says. That, in turn, helps people articulate their needs so they can “shape the world to be more to their liking.”\u003c/p>\n\u003cp>That was one of Valencia’s big takeaways: “Knowing that I have a choice,” she says. “Anytime something is bothering me, I can do something about it.”\u003c/p>\n\u003cp>\u003cstrong>The Second Session\u003c/strong>\u003c/p>\n\u003cp>When it was time for Valencia’s second MDMA session, she felt her original goal of being more assertive was now not quite right. It felt like a concession to societal pressure to fit in. She needed to let go of that, she says, and release the pressure she was putting on herself to always be involved, to be better all the time, to be different.\u003c/p>\n\u003cp>“In session number two, there was a moment I was just sitting in a big comfy chair,” Valencia says. “Letting my hands do whatever my hands wanted to do, kind of floating around. It looks like nothing is happening.”\u003c/p>\n\u003cp>But in fact, Valencia says, her mind was racing with thoughts, one idea popping up after another.\u003c/p>\n\u003cp>“And I thought, ‘Oh, these are some good ideas. I should write them down,” she says. “And then I stopped myself. ‘Do I have to do this? I can just sit here. And enjoy them.’”\u003c/p>\n\u003cp>When she flipped through the emotion cards, she picked one where the illustration was a swirl of blackness. The word was “depressed,” but Valencia says she saw something else.\u003c/p>\n\u003cp>“Not having to do something in every moment, not having to \u003cem>feel \u003c/em>anything for just a couple hours,” she says. “That was such a relief.”\u003c/p>\n\u003cp>\u003cstrong>Reflections \u003c/strong>\u003c/p>\n\u003cp>Valencia completed the treatment last year. It’s impossible to draw a direct line between the treatment and how Valencia is doing right now, but she says she’s doing great. She’s got a steady full-time job, her own apartment, and she just got married. The study is still ongoing, so Valencia won’t know if her scores on the social anxiety tests improved until all participants finish the treatment and the researchers analyze the data.\u003c/p>\n\u003cp>But she says her biggest takeaway from the experiment is more about emotions than social anxiety.\u003c/p>\n\u003cp>She says she’s learned that there’s no such thing as good emotions or bad emotions.\u003c/p>\n\u003cp>“All emotions deserve to exist,” she says.\u003c/p>\n\u003cp>This underscores a process of transformation Valencia started a couple years before the MDMA treatment around her autistic identity. She started reading essays by Nick Walker, the autism advocate based in Berkeley. He rejects the notion that autism is a disease, the same way the gay community rejects the notion that homosexuality is a disease.\u003c/p>\n\u003cp>Walker says autistic brains are simply different. They’re part of the patchwork of neurodiversity in the human population.\u003c/p>\n\u003cp>“There’s the dominant belief in society that there's good brains and bad brains,” Valencia says. “And from a neurodiversity perspective, all those concepts are no longer valid.”\u003c/p>\n\u003cp>After the MDMA treatment, Valencia started to see emotions in the same way, along the same continuum of self-acceptance.\u003c/p>\n\u003cp>“Once you do away with that most basic of dichotomies, good versus bad, and just make it all sort of a jumbled mess of the same thing, then you can either hate yourself as a whole or you can accept and love yourself as a whole,” she says. “And I think, it’s not always as easy as making a decision, but it’s pretty obvious which one is preferable.”\u003ca id=\"note\">\u003c/a>\u003c/p>\n\u003cp>\u003cem>Editor's Note:\u003c/em>\u003c/p>\n\u003cp>\u003cem>After completing the full course of MDMA treatment and working on assertiveness, Valencia began asking friends and acquaintances to use the pronouns “they, them, their.” Valencia identifies as gender-vague.\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"disqusTitle": "Ever Ask Your Kids if They Want Photos of Them Shared Online? Maybe You Should.",
"title": "Ever Ask Your Kids if They Want Photos of Them Shared Online? Maybe You Should.",
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"content": "\u003cp>When Katlyn Burbidge's son was 6 years old, he was performing some silly antic typical of a first-grader. But after she snapped a photo and started using her phone, he asked her a serious question: \"Are you going to post that to Facebook?\"\u003c/p>\n\u003cp>She laughed and answered, \"Yes, I think I will.\" What he said next stopped her.\u003c/p>\n\u003caside class=\"pullquote alignright\">\"The parents said, ‘We don’t need rules — we’re fine,’ and the children said, ‘Our parents need rules.’ ”\u003c/aside>\n\u003cp>That's when it dawned on her: She had been posting photos of him online without asking his permission.\u003c/p>\n\u003cp>\"We're big proponents of bodily autonomy and not forcing him to hug or kiss people unless he wants to, but it never occurred to me that I should ask his permission to post photos of him online,\" says Burbridge, a mom of two in Wakefield, Mass. \"Now when I post photos of him on Facebook, I show him the photo and get his OK. I get to approve tags and photos of myself I want posted — why not my child?\"\u003c/p>\n\u003cp>When her 8-month-old is 3 or 4 years old, she plans to start asking him in an age-appropriate way, \"Do you want other people to see this?\"\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>That's precisely the approach that two researchers advocated before a room of pediatricians last week at the American Academy of Pediatrics meeting, when they discussed the 21st century challenge of \"sharenting,\" a new term for parents' online sharing about their children.\u003c/p>\n\u003cp>\"As children's-rights advocates, we believe that children should have a voice about what information is shared about them if possible,\" says Stacey Steinberg, a legal skills professor at the University of Florida Levin College of Law in Gainesville.\u003c/p>\n\u003cp>Whether it's ensuring your child isn't bullied over something you post, that their identity isn't \u003ca href=\"http://www.cosmopolitan.com/lifestyle/a44264/digital-kidnapping/\">digitally\u003c/a> \"\u003ca href=\"https://www.fastcompany.com/3036073/the-creepiest-new-corner-of-instagram-role-playing-with-stolen-baby-photos\">kidnapped\u003c/a>\" or that their photos don't end up on a half dozen child pornography sites, as \u003ca href=\"http://www.kidspot.com.au/parenting/real-life/reader-stories/mums-warning-i-found-my-childrens-photos-on-porn-sites\">one Australian mom discovered\u003c/a>, parents and pediatricians are increasingly aware of the importance of protecting children's digital presence.\u003c/p>\n\u003cp>Steinberg and \u003ca href=\"https://ufhealth.org/bahareh-keith\">Bahareh Keith\u003c/a>, an assistant professor of pediatrics at the University of Florida College of Medicine, say most children will likely never experience problems related to what their parents share, but a tension still exists between parents' rights to share their experiences and their children's rights to privacy.\u003c/p>\n\u003cp>\"We're in no way trying to silence parents' voices,\" Steinberg says. \"At the same time, we recognize that children might have an interest in entering adulthood free to create their own digital footprint.\"\u003c/p>\n\u003cp>They cited a \u003ca href=\"http://yardi.people.si.umich.edu/pubs/Schoenebeck_FamilyTechRules16.pdf\">study presented earlier this year\u003c/a> of 249 pairs of parents and their children in which more than twice as many children than parents wanted rules on what parents could share.\u003c/p>\n\u003cp>\"The parents said, 'We don't need rules — we're fine,' and the children said, 'Our parents need rules,' \" Keith says. \"The children wanted autonomy about this issue and were worried about their parents sharing information about them.\"\u003c/p>\n\u003cp>She pointed out that the American Academy of Pediatrics offers \u003ca href=\"http://pediatrics.aappublications.org/content/early/2016/10/19/peds.2016-2591\">guidelines\u003c/a> to parents on monitoring their children's social media use, but not the other way around, something \u003ca href=\"http://doctordavidhill.com/about-dr-hill/\">David Hill\u003c/a>, chair of the AAP Council on Communications and Media, expects will become an important part of AAP's messaging.\u003c/p>\n\u003cp>Although its current media guidelines do recommend that parents model appropriate social media use for their children, it does not explicitly discuss oversharing by parents.\u003c/p>\n\u003cp>\"I think this is a very legitimate concern, and I appreciate their drawing our attention to it,\" Hill, a father of five, says. He sees a role for pediatricians to talk with parents about this, but believes the messaging must extend far beyond pediatricians' offices. \"I look forward to seeing researchers expand our understanding of the issue so we can translate it into effective education and policy,\" he says.\u003c/p>\n\u003cp>There's been little research on the topic, Steinbert wrote in a \u003ca href=\"https://papers.ssrn.com/sol3/papers.cfm?abstract_id=2711442\">law article\u003c/a> about this issue. While states could pass laws related to sharing information about children online, Steinberg feels parents themselves are generally best suited to make these decisions for their families.\u003c/p>\n\u003cp>\"While we didn't want to create any unnecessary panic, we did find some concerns that were troublesome, and we thought that parents or at least physicians should be aware of those potential risks,\" Steinberg says. They include photos repurposed for inappropriate or illegal means, identity theft, embarrassment, bullying by peers or \u003ca href=\"https://www.yahoo.com/news/mom-my-son-was-digitally-kidnapped-what-112545291567.html\">digital kidnapping\u003c/a>.\u003c/p>\n\u003cp>Parents aren't oblivious to these possibilities. A March 2015 \u003ca href=\"http://mottnpch.org/sites/default/files/documents/031615_sharenting_0.pdf\">survey of 569 parents\u003c/a> of children ages 4 and younger, conducted by C.S. Mott Children's Hospital at the University of Michigan, found that 68 percent worried about their child's privacy and 67 percent worried their children's photos might be reshared — a concern grounded in reality.\u003c/p>\n\u003cp>For example, an unscientific survey of an online child pornography site by an Australian government official found a \u003ca href=\"http://www.smh.com.au/national/millions-of-social-media-photos-found-on-child-exploitation-sharing-sites-20150929-gjxe55.html\">significant chunk of the photos\u003c/a> had initially been shared by parents on sites such as Facebook and Instagram. The photos themselves were mostly innocent, everyday scenes of kids playing, but they were accompanied by explicit, inappropriate comments. The Australian official estimated that \"about half\" of the 45 million images \"appeared to be sourced directly from social media.\"\u003c/p>\n\u003cp>But that's the sordid side, with risks that must be balanced against the benefits of sharing. Steinberg pointed out that parental sharing on social media helps build communities, connect spread-out families, provide support and raise awareness around important social issues for which parents might be their child's only voice.\u003c/p>\n\u003cp>The same C.S. Mott survey found among the 56 percent of mothers and 34 percent of fathers who discussed parenting on social media, 72 percent of them said sharing made them feel less alone and nearly as many said sharing helped them worry less and gave them advice from other parents. The most common topics they discussed included kids' sleep, nutrition, discipline, behavior problems and day care and preschool.\u003c/p>\n\u003cp>\"There's this peer-to-peer nature of health care these days with a profound opportunity for parents to learn helpful tips, safety and prevention efforts, pro-vaccine messages and all kinds of other messages from other parents in their social communities,\" says Wendy Sue Swanson, a pediatrician and executive director of digital health at Seattle Children's Hospital, where \u003ca href=\"http://seattlemamadoc.seattlechildrens.org/\">she blogs\u003c/a> about her own parenting journey to help other parents. \"They're getting nurtured by people they've already preselected that they trust,\" she says.\u003c/p>\n\u003cp>\"How do we weigh the risks, how do we think about the benefits, and how do we mitigate the risks?\" she says. \"Those are the questions we need to ask ourselves, and everyone can have a different answer.\"\u003c/p>\n\u003cp>For mom Karen Koy, of Platte City, Mo., avoiding nudity or posts about bodily fluids is a given, but for things she's uncertain about, she asks herself a series of questions.\u003c/p>\n\u003cp>\"Who does this serve? If it's anyone other than the kid, no go,\" she explained via Facebook Messenger. \"Is this something people would enjoy hearing or seeing? If the answer is no, no go. Is this something I would love to see pop up as a Facebook memory on a bad day? If not, no go.\"\u003c/p>\n\u003cp>The last question is the reason she did not share photos when her daughter was hospitalized.\u003c/p>\n\u003cp>\"She looked adorable in the oversized hospital gown, which she was wearing because she was vulnerable, and I feel like posting that takes advantage of that vulnerability to gain attention for us, her parents,\" Koy says. \"Her being in the hospital shouldn't be about us, it should be about her and what she needs in that moment.\"\u003c/p>\n\u003cp>Some parents find the best route for them is not to share at all. Bridget O'Hanlon and her husband, who live in Cleveland, decided before their daughter was born that they would not post her photos online. When a few family members did post pictures, O'Hanlon and her husband made their wishes clear.\u003c/p>\n\u003cp>\"It's been hard not to share pics of her because people always want to know how babies and toddlers are doing and to see pictures, but we made the decision to have social media, she did not,\" O'Hanlon told NPR via Facebook Messenger.\u003c/p>\n\u003cp>Similarly, Alison Jamison of Fairport, N.Y., decided with her husband that their child had a right to their own online identity. They did use an invitation-only photo sharing platform so that friends and family, including those far away, could see the photos, but they stood firm when they received pushback about not using other social media platforms, she told NPR via Facebook Messenger.\u003c/p>\n\u003cp>\"For most families, it's a journey. Sometimes it goes wrong, but most of the time it doesn't,\" says Swanson, who recommends starting to ask children permission to post narratives or photos around ages 6 to 8. \"We'll learn more and more what our tolerance is. We can ask our kids to help us learn as a society what's okay and what's not.\"\u003c/p>\n\u003cp>Indeed, that learning process goes both ways. Bria Dunham, a mother in Somerville, Mass., was so excited to watch a moment of brotherly bonding while her first-grader and baby took a bath together that she snapped a few photos. But when she considered posting them on Facebook, she took the perspective of her son: How would he feel if his classmates' parents saw photos of him chest-up in the bathtub?\u003c/p>\n\u003cp>\"It made me think about how I am teaching him to have ownership of his own body and how what is shared today endures into the future,\" Dunham says. \"So I kept the pictures to myself and accepted this as one more step in supporting his increasing autonomy.\"\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Tara Haelle is the co-author of \u003c/em>\u003ca href=\"http://www.npr.org/books/titles/473075468/the-informed-parent-a-science-based-resource-for-your-childs-first-four-years\">The Informed Parent: A Science-Based Resource for Your Child's First Four Years\u003c/a>\u003cem>. She's on Twitter: \u003c/em>\u003ca href=\"https://twitter.com/tarahaelle\">@tarahaelle\u003c/a>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Do+Parents+Invade+Children%27s+Privacy+When+They+Post+Photos+Online%3F+&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>When Katlyn Burbidge's son was 6 years old, he was performing some silly antic typical of a first-grader. But after she snapped a photo and started using her phone, he asked her a serious question: \"Are you going to post that to Facebook?\"\u003c/p>\n\u003cp>She laughed and answered, \"Yes, I think I will.\" What he said next stopped her.\u003c/p>\n\u003caside class=\"pullquote alignright\">\"The parents said, ‘We don’t need rules — we’re fine,’ and the children said, ‘Our parents need rules.’ ”\u003c/aside>\n\u003cp>That's when it dawned on her: She had been posting photos of him online without asking his permission.\u003c/p>\n\u003cp>\"We're big proponents of bodily autonomy and not forcing him to hug or kiss people unless he wants to, but it never occurred to me that I should ask his permission to post photos of him online,\" says Burbridge, a mom of two in Wakefield, Mass. \"Now when I post photos of him on Facebook, I show him the photo and get his OK. I get to approve tags and photos of myself I want posted — why not my child?\"\u003c/p>\n\u003cp>When her 8-month-old is 3 or 4 years old, she plans to start asking him in an age-appropriate way, \"Do you want other people to see this?\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>That's precisely the approach that two researchers advocated before a room of pediatricians last week at the American Academy of Pediatrics meeting, when they discussed the 21st century challenge of \"sharenting,\" a new term for parents' online sharing about their children.\u003c/p>\n\u003cp>\"As children's-rights advocates, we believe that children should have a voice about what information is shared about them if possible,\" says Stacey Steinberg, a legal skills professor at the University of Florida Levin College of Law in Gainesville.\u003c/p>\n\u003cp>Whether it's ensuring your child isn't bullied over something you post, that their identity isn't \u003ca href=\"http://www.cosmopolitan.com/lifestyle/a44264/digital-kidnapping/\">digitally\u003c/a> \"\u003ca href=\"https://www.fastcompany.com/3036073/the-creepiest-new-corner-of-instagram-role-playing-with-stolen-baby-photos\">kidnapped\u003c/a>\" or that their photos don't end up on a half dozen child pornography sites, as \u003ca href=\"http://www.kidspot.com.au/parenting/real-life/reader-stories/mums-warning-i-found-my-childrens-photos-on-porn-sites\">one Australian mom discovered\u003c/a>, parents and pediatricians are increasingly aware of the importance of protecting children's digital presence.\u003c/p>\n\u003cp>Steinberg and \u003ca href=\"https://ufhealth.org/bahareh-keith\">Bahareh Keith\u003c/a>, an assistant professor of pediatrics at the University of Florida College of Medicine, say most children will likely never experience problems related to what their parents share, but a tension still exists between parents' rights to share their experiences and their children's rights to privacy.\u003c/p>\n\u003cp>\"We're in no way trying to silence parents' voices,\" Steinberg says. \"At the same time, we recognize that children might have an interest in entering adulthood free to create their own digital footprint.\"\u003c/p>\n\u003cp>They cited a \u003ca href=\"http://yardi.people.si.umich.edu/pubs/Schoenebeck_FamilyTechRules16.pdf\">study presented earlier this year\u003c/a> of 249 pairs of parents and their children in which more than twice as many children than parents wanted rules on what parents could share.\u003c/p>\n\u003cp>\"The parents said, 'We don't need rules — we're fine,' and the children said, 'Our parents need rules,' \" Keith says. \"The children wanted autonomy about this issue and were worried about their parents sharing information about them.\"\u003c/p>\n\u003cp>She pointed out that the American Academy of Pediatrics offers \u003ca href=\"http://pediatrics.aappublications.org/content/early/2016/10/19/peds.2016-2591\">guidelines\u003c/a> to parents on monitoring their children's social media use, but not the other way around, something \u003ca href=\"http://doctordavidhill.com/about-dr-hill/\">David Hill\u003c/a>, chair of the AAP Council on Communications and Media, expects will become an important part of AAP's messaging.\u003c/p>\n\u003cp>Although its current media guidelines do recommend that parents model appropriate social media use for their children, it does not explicitly discuss oversharing by parents.\u003c/p>\n\u003cp>\"I think this is a very legitimate concern, and I appreciate their drawing our attention to it,\" Hill, a father of five, says. He sees a role for pediatricians to talk with parents about this, but believes the messaging must extend far beyond pediatricians' offices. \"I look forward to seeing researchers expand our understanding of the issue so we can translate it into effective education and policy,\" he says.\u003c/p>\n\u003cp>There's been little research on the topic, Steinbert wrote in a \u003ca href=\"https://papers.ssrn.com/sol3/papers.cfm?abstract_id=2711442\">law article\u003c/a> about this issue. While states could pass laws related to sharing information about children online, Steinberg feels parents themselves are generally best suited to make these decisions for their families.\u003c/p>\n\u003cp>\"While we didn't want to create any unnecessary panic, we did find some concerns that were troublesome, and we thought that parents or at least physicians should be aware of those potential risks,\" Steinberg says. They include photos repurposed for inappropriate or illegal means, identity theft, embarrassment, bullying by peers or \u003ca href=\"https://www.yahoo.com/news/mom-my-son-was-digitally-kidnapped-what-112545291567.html\">digital kidnapping\u003c/a>.\u003c/p>\n\u003cp>Parents aren't oblivious to these possibilities. A March 2015 \u003ca href=\"http://mottnpch.org/sites/default/files/documents/031615_sharenting_0.pdf\">survey of 569 parents\u003c/a> of children ages 4 and younger, conducted by C.S. Mott Children's Hospital at the University of Michigan, found that 68 percent worried about their child's privacy and 67 percent worried their children's photos might be reshared — a concern grounded in reality.\u003c/p>\n\u003cp>For example, an unscientific survey of an online child pornography site by an Australian government official found a \u003ca href=\"http://www.smh.com.au/national/millions-of-social-media-photos-found-on-child-exploitation-sharing-sites-20150929-gjxe55.html\">significant chunk of the photos\u003c/a> had initially been shared by parents on sites such as Facebook and Instagram. The photos themselves were mostly innocent, everyday scenes of kids playing, but they were accompanied by explicit, inappropriate comments. The Australian official estimated that \"about half\" of the 45 million images \"appeared to be sourced directly from social media.\"\u003c/p>\n\u003cp>But that's the sordid side, with risks that must be balanced against the benefits of sharing. Steinberg pointed out that parental sharing on social media helps build communities, connect spread-out families, provide support and raise awareness around important social issues for which parents might be their child's only voice.\u003c/p>\n\u003cp>The same C.S. Mott survey found among the 56 percent of mothers and 34 percent of fathers who discussed parenting on social media, 72 percent of them said sharing made them feel less alone and nearly as many said sharing helped them worry less and gave them advice from other parents. The most common topics they discussed included kids' sleep, nutrition, discipline, behavior problems and day care and preschool.\u003c/p>\n\u003cp>\"There's this peer-to-peer nature of health care these days with a profound opportunity for parents to learn helpful tips, safety and prevention efforts, pro-vaccine messages and all kinds of other messages from other parents in their social communities,\" says Wendy Sue Swanson, a pediatrician and executive director of digital health at Seattle Children's Hospital, where \u003ca href=\"http://seattlemamadoc.seattlechildrens.org/\">she blogs\u003c/a> about her own parenting journey to help other parents. \"They're getting nurtured by people they've already preselected that they trust,\" she says.\u003c/p>\n\u003cp>\"How do we weigh the risks, how do we think about the benefits, and how do we mitigate the risks?\" she says. \"Those are the questions we need to ask ourselves, and everyone can have a different answer.\"\u003c/p>\n\u003cp>For mom Karen Koy, of Platte City, Mo., avoiding nudity or posts about bodily fluids is a given, but for things she's uncertain about, she asks herself a series of questions.\u003c/p>\n\u003cp>\"Who does this serve? If it's anyone other than the kid, no go,\" she explained via Facebook Messenger. \"Is this something people would enjoy hearing or seeing? If the answer is no, no go. Is this something I would love to see pop up as a Facebook memory on a bad day? If not, no go.\"\u003c/p>\n\u003cp>The last question is the reason she did not share photos when her daughter was hospitalized.\u003c/p>\n\u003cp>\"She looked adorable in the oversized hospital gown, which she was wearing because she was vulnerable, and I feel like posting that takes advantage of that vulnerability to gain attention for us, her parents,\" Koy says. \"Her being in the hospital shouldn't be about us, it should be about her and what she needs in that moment.\"\u003c/p>\n\u003cp>Some parents find the best route for them is not to share at all. Bridget O'Hanlon and her husband, who live in Cleveland, decided before their daughter was born that they would not post her photos online. When a few family members did post pictures, O'Hanlon and her husband made their wishes clear.\u003c/p>\n\u003cp>\"It's been hard not to share pics of her because people always want to know how babies and toddlers are doing and to see pictures, but we made the decision to have social media, she did not,\" O'Hanlon told NPR via Facebook Messenger.\u003c/p>\n\u003cp>Similarly, Alison Jamison of Fairport, N.Y., decided with her husband that their child had a right to their own online identity. They did use an invitation-only photo sharing platform so that friends and family, including those far away, could see the photos, but they stood firm when they received pushback about not using other social media platforms, she told NPR via Facebook Messenger.\u003c/p>\n\u003cp>\"For most families, it's a journey. Sometimes it goes wrong, but most of the time it doesn't,\" says Swanson, who recommends starting to ask children permission to post narratives or photos around ages 6 to 8. \"We'll learn more and more what our tolerance is. We can ask our kids to help us learn as a society what's okay and what's not.\"\u003c/p>\n\u003cp>Indeed, that learning process goes both ways. Bria Dunham, a mother in Somerville, Mass., was so excited to watch a moment of brotherly bonding while her first-grader and baby took a bath together that she snapped a few photos. But when she considered posting them on Facebook, she took the perspective of her son: How would he feel if his classmates' parents saw photos of him chest-up in the bathtub?\u003c/p>\n\u003cp>\"It made me think about how I am teaching him to have ownership of his own body and how what is shared today endures into the future,\" Dunham says. \"So I kept the pictures to myself and accepted this as one more step in supporting his increasing autonomy.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>Tara Haelle is the co-author of \u003c/em>\u003ca href=\"http://www.npr.org/books/titles/473075468/the-informed-parent-a-science-based-resource-for-your-childs-first-four-years\">The Informed Parent: A Science-Based Resource for Your Child's First Four Years\u003c/a>\u003cem>. She's on Twitter: \u003c/em>\u003ca href=\"https://twitter.com/tarahaelle\">@tarahaelle\u003c/a>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Do+Parents+Invade+Children%27s+Privacy+When+They+Post+Photos+Online%3F+&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>https://www.youtube.com/watch?v=ej0b7GHGYjs\u003c/p>\n\u003cp>Henrietta Lacks. Born 1920. Black Virginian, tobacco farmer, steel worker.\u003c/p>\n\u003cp>Cancer patient. Poor.\u003c/p>\n\u003cp>At Johns Hopkins, in 1951, while Lacks was being treated in the \"colored\" ward, a doctor passed on samples from her cervix to researchers, without her consent or even knowledge.\u003c/p>\n\u003cp>That same year, at age 31, she died.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Not all of her, though.\u003c/p>\n\u003cp>Cells derived from the two samples taken from an unwitting Lacks have inexplicably lived on in labs for over 60 years now, used to research the effects of radiation, AIDS, the polio vaccine and much more. Here's what Rebecca Skloot, author of the 2010 book \"The Immortal Life of Henrietta Lacks,\" told NPR's \"\u003ca href=\"http://www.npr.org/2010/02/02/123232331/henrietta-lacks-a-donors-immortal-legacy\" target=\"_blank\">Fresh Air\u003c/a>\" in 2010.\u003c/p>\n\u003cblockquote>\u003cp>[The cells] were the first immortal cell line ever to grow in culture. Scientists put them in culture in 1951, and they just never died. They kept growing and growing and growing. And scientists had been trying to do that for decades, and it had never worked.\u003c/p>\n\u003cp>When she went to the hospital, she had a tumor on her cervix that was about the size of a dime, and within six months nearly every organ of her body was taken over by tumors. So her cancer grew incredibly fast in her body. When scientists put them in culture, they just took off. They doubled every 24 hours and they sort of piled onto each other and grew in these enormous ... quantities that no cells had ever done before.\u003c/p>\u003c/blockquote>\n\u003cp>Those cells have done a lot of good -- and also contributed to a lot of profits. The case, which is as much about class, gender and race as it is about science, has spawned \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/10/18/what-stem-cell-researchers-talk-about-when-they-talk-about-ethics/\" target=\"_blank\">ethical debates\u003c/a> about informed consent among researchers. To learn more, you can read the book or watch the coming HBO movie based on it. (Look \u003ca href=\"http://www.dailymail.co.uk/tvshowbiz/article-3755716/Oprah-Winfrey-wears-1950s-garb-filming-HBO-movie-Henrietta-Lacks-Atlanta.html\" target=\"_blank\">here \u003c/a>for many pictures of Oprah Winfrey on set playing Lacks' daughter.)\u003c/p>\n\u003cp>But we recommend that first you should watch the awesome video above. \"The Immortal Rap of Henrietta Lacks\" stars mostly eighth graders from KIPP Bridge Charter School in Oakland, California. The students researched and wrote the lyrics -- set to the songs \"Right Hand,\" \"Shell Shocked\" and \"Work\" -- with help from their performing arts teacher, Shannon Perkins, and San Francisco Bay Area educator Tom McFadden, who runs a small organization devoted to the intersection of science and the arts. McFadden sent drafts of the piece to Henrietta Lacks' granddaughter for approval.\u003c/p>\n\u003cp>I asked him how this idea came about.\u003c/p>\n\u003cp>\"I’d done one \u003ca href=\"https://www.youtube.com/watch?v=35FwmiPE9tI\" target=\"_blank\">project\u003c/a> before with this school on \u003ca href=\"http://www.pbs.org/wgbh/nova/tech/rosalind-franklin-legacy.html\" target=\"_blank\">Rosalind Franklin\u003c/a>,\" McFadden said. \"When I published that video, Rebecca Skloot said for your next project you should do one on Henrietta Lacks. She planted the seed through a tweet.\" (And makes a cameo in the video, as well.)\u003c/p>\n\u003cp>McFadden said he hoped the video would inspire schools and educators to embrace \u003ca href=\"https://twitter.com/hashtag/HipHopEd?src=hash\" target=\"_blank\">#HipHopEd\u003c/a>, interdisciplinary project-based learning, and \"the value of performing arts for student ownership of their scholastic experience.\"\u003c/p>\n\u003cp>Or maybe ...\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Hey, \u003ca href=\"https://twitter.com/Lin_Manuel\" target=\"_blank\">Lin-Manuel Miranda\u003c/a>, check it out!\u003c/p>\n\n",
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"excerpt": "Henrietta Lacks was a poor African-American woman who died in 1951, and whose cells have been used in scientific research for decades. Her story has been told in a best-selling book -- and now an awesome middle school rap video.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/ej0b7GHGYjs'\n title='//www.youtube.com/embed/ej0b7GHGYjs'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>Henrietta Lacks. Born 1920. Black Virginian, tobacco farmer, steel worker.\u003c/p>\n\u003cp>Cancer patient. Poor.\u003c/p>\n\u003cp>At Johns Hopkins, in 1951, while Lacks was being treated in the \"colored\" ward, a doctor passed on samples from her cervix to researchers, without her consent or even knowledge.\u003c/p>\n\u003cp>That same year, at age 31, she died.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Not all of her, though.\u003c/p>\n\u003cp>Cells derived from the two samples taken from an unwitting Lacks have inexplicably lived on in labs for over 60 years now, used to research the effects of radiation, AIDS, the polio vaccine and much more. Here's what Rebecca Skloot, author of the 2010 book \"The Immortal Life of Henrietta Lacks,\" told NPR's \"\u003ca href=\"http://www.npr.org/2010/02/02/123232331/henrietta-lacks-a-donors-immortal-legacy\" target=\"_blank\">Fresh Air\u003c/a>\" in 2010.\u003c/p>\n\u003cblockquote>\u003cp>[The cells] were the first immortal cell line ever to grow in culture. Scientists put them in culture in 1951, and they just never died. They kept growing and growing and growing. And scientists had been trying to do that for decades, and it had never worked.\u003c/p>\n\u003cp>When she went to the hospital, she had a tumor on her cervix that was about the size of a dime, and within six months nearly every organ of her body was taken over by tumors. So her cancer grew incredibly fast in her body. When scientists put them in culture, they just took off. They doubled every 24 hours and they sort of piled onto each other and grew in these enormous ... quantities that no cells had ever done before.\u003c/p>\u003c/blockquote>\n\u003cp>Those cells have done a lot of good -- and also contributed to a lot of profits. The case, which is as much about class, gender and race as it is about science, has spawned \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/10/18/what-stem-cell-researchers-talk-about-when-they-talk-about-ethics/\" target=\"_blank\">ethical debates\u003c/a> about informed consent among researchers. To learn more, you can read the book or watch the coming HBO movie based on it. (Look \u003ca href=\"http://www.dailymail.co.uk/tvshowbiz/article-3755716/Oprah-Winfrey-wears-1950s-garb-filming-HBO-movie-Henrietta-Lacks-Atlanta.html\" target=\"_blank\">here \u003c/a>for many pictures of Oprah Winfrey on set playing Lacks' daughter.)\u003c/p>\n\u003cp>But we recommend that first you should watch the awesome video above. \"The Immortal Rap of Henrietta Lacks\" stars mostly eighth graders from KIPP Bridge Charter School in Oakland, California. The students researched and wrote the lyrics -- set to the songs \"Right Hand,\" \"Shell Shocked\" and \"Work\" -- with help from their performing arts teacher, Shannon Perkins, and San Francisco Bay Area educator Tom McFadden, who runs a small organization devoted to the intersection of science and the arts. McFadden sent drafts of the piece to Henrietta Lacks' granddaughter for approval.\u003c/p>\n\u003cp>I asked him how this idea came about.\u003c/p>\n\u003cp>\"I’d done one \u003ca href=\"https://www.youtube.com/watch?v=35FwmiPE9tI\" target=\"_blank\">project\u003c/a> before with this school on \u003ca href=\"http://www.pbs.org/wgbh/nova/tech/rosalind-franklin-legacy.html\" target=\"_blank\">Rosalind Franklin\u003c/a>,\" McFadden said. \"When I published that video, Rebecca Skloot said for your next project you should do one on Henrietta Lacks. She planted the seed through a tweet.\" (And makes a cameo in the video, as well.)\u003c/p>\n\u003cp>McFadden said he hoped the video would inspire schools and educators to embrace \u003ca href=\"https://twitter.com/hashtag/HipHopEd?src=hash\" target=\"_blank\">#HipHopEd\u003c/a>, interdisciplinary project-based learning, and \"the value of performing arts for student ownership of their scholastic experience.\"\u003c/p>\n\u003cp>Or maybe ...\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Hey, \u003ca href=\"https://twitter.com/Lin_Manuel\" target=\"_blank\">Lin-Manuel Miranda\u003c/a>, check it out!\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "The Cost of 'Free' Internet Content",
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"headTitle": "KQED Future of You | KQED Science",
"content": "\u003cp>If you feel like Internet ads are more pervasive and invasive than ever before, you're not alone. Author Tim Wu tells \"Fresh Air's\" Terry Gross that the Web has gotten worse over the years, not better — and unrelenting ads are to blame.\u003c/p>\n\u003cp>\"I think you spend 50 percent of your mental energy trying to defeat ad systems,\" Wu says. \"It's amazing that we've got this great scientific invention, the Web and the Internet, and then it has come to the point where using it reminds me of swatting mosquitoes.\"\u003c/p>\n\u003cp>As a professor at Columbia Law School, Wu became known as \u003ca href=\"http://www.npr.org/2014/04/24/306542099/what-do-net-neutrality-rules-mean-for-web-users\" target=\"_blank\">an open Internet advocate\u003c/a> who is credited with coining the term \"\u003ca href=\"http://www.npr.org/sections/alltechconsidered/2014/07/21/333737282/net-neutrality-shall-i-compare-thee-to-a-highway-a-showerhead\" target=\"_blank\">net neutrality\u003c/a>.\" His new book, \u003cem>The Attention Merchants,\u003c/em> examines how advertising has changed the Internet — and how those changes affect us.\u003c/p>\n\u003cp>He says the book was inspired by his own experience of sitting down to look something up on the computer and finding, four hours later, that he had slid into a world of digital distraction. \"It's what I call the casino effect,\" Wu says. \"It's this effort of the environment to make you lose control of your sense of time and your attention kind of gets dragged away.\"\u003c/p>\n\u003cp>Wu points out that much of the \"free\" content on the Internet comes at a price to users, who are subjected to ads that are targeted specifically at them and which are increasingly difficult to ignore or close. \"Google, Facebook, Twitter — the whole set of companies essentially knows all your weaknesses and essentially how to manipulate you in subtle ways in order to have you do things you might not otherwise do,\" he says.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Wu says that although the Internet is full of \"clickbait that brings ads along like a bad cold,\" it doesn't have to be that way. \"We can have a better Web,\" he says. \"Whether it's a combination of subscription models or nonprofit models, I would like to have a Web that we feel proud of, that lives up to its promise.\"\u003c/p>\n\u003chr>\n\u003cp>\u003cstrong>Interview Highlights\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>On \u003c/strong>\u003cstrong>the quest for clicks\u003c/strong>\u003c/p>\n\u003cp>It's inherent to the business model. It's very driven with the need to grow, to get more clicks and clicks and clicks. And some of this book is about the history, and we often say that ratings kind of ruined television in the 1950s, well, the quest for ratings looks dignified in comparison to the quest for clicks.\u003c/p>\n\u003cp>So much engineering talent and ability has gone into trying to make people click on things that I think we've almost lost the last five years of development. It's been very disappointing.\u003c/p>\n\u003cp>\u003cstrong>On how we are used to content being free\u003c/strong>\u003c/p>\n\u003cp>It's a bargain with some historical precedent. I think back starting with radio, starting with television, we got used to this idea of stuff being free as long as you just watch a few ads. ...\u003c/p>\n\u003cp>This attention-merchant model has spread to so many areas of our life, where we're completely used to everything being free. But then the payoff, or the exchange, is that then we also agree to stuff that is compromised, because it is always trying to get us to click on ads at the same time. So we have this bargain that we made — and you can call it Faustian, you can call it whatever you want — that we have decided that we have to have everything for free, and I think we're starting to pay for it in terms of our mental states.\u003c/p>\n\u003cp>\u003cstrong>On \u003c/strong>\u003cstrong>the price of 'free' Internet content \u003c/strong>\u003c/p>\n\u003cp>If you really want change in this area, and you want to act, you probably have to pay for stuff, pay for content. Some people are like, \"Oh my God I have to pay?\" But people do pay. They pay for Netflix, they pay for HBO, they pay for other types — they subscribe to newspapers sometimes.\u003c/p>\n\u003cp>Generally speaking, when you pay for stuff it has more of your interests at heart. ... In other words, a lot of the websites are always serving two masters, they're both trying to get you entertained enough to stay there, or to click on things, but to also then make it a good platform for advertising. So I have sort of a plea to people who want to change these sort of things is, like, maybe just suck it up and start paying for more stuff.\u003c/p>\n\u003cp>\u003cstrong>On the pervasiveness of Internet advertising\u003c/strong>\u003c/p>\n\u003cp>In the media, traditional media like print, we had boundaries, we had spaces that ads didn't leave, they stayed where they were on the page, they didn't float around over the text, and we're sort of lost on the Internet.\u003c/p>\n\u003cp>We don't have any barriers. We have a demand for growth that is insistent, and so advertising just keeps getting heavier and heavier and heavier. It doesn't have any natural limit, and we haven't found a place for the limit.\u003c/p>\n\u003cp>\u003cstrong>On Google's approach to advertising\u003c/strong>\u003c/p>\n\u003cp>I think Google is the most profitable attention merchant in the history of the world. ... They started a very idealistic beautiful company in many ways, but they didn't have a business model.\u003c/p>\n\u003cp>The most interesting thing about Google is its founders hated advertising and in fact, they wrote this paper in the '90s, saying in its appendix that any advertising-based search engine would always be corrupted and unable to serve its highest purposes, because advertising always corrupts the goal of the search engine, which is to try to give you the most important stuff, not the stuff someone paid to be there.\u003c/p>\n\u003cp>Google is this conflicted company. I think they thought they could do this deal and keep advertising at bay, but I think year in, year out Google is starting to get worse instead of better. ... You can see it with Google Maps, you can see it with Google Directions where somehow Uber is always one of the options, and it's becoming exactly what they said was what they never wanted, which is a pay-for service where the highest bidder gets the best results. So it's kind of a cautionary tale.\u003c/p>\n\u003cp>I do think the best thing for companies like Google and Facebook, if they are afraid of this ethical trap of advertising, is they should start letting people pay who want to pay and avoid some of the advertising.\u003c/p>\n\u003cp>\u003cstrong>On how advertisers can use technology to target individual \u003c/strong>\u003cstrong>\"moments\"\u003c/strong>\u003c/p>\n\u003cp>I think this is going to become more intense in the coming decade as we start to carry more and more technology with us. We already have our phones, but other wearables and those technologies are going to want to know when you're deciding things and then offer some kind of input, subtle or less so, on that moment.\u003c/p>\n\u003cp>So you know, discovering the moment: Let's say you're someone's phone and you notice that your owner is drinking coffee at certain times of the day, just very subtly indicating where the local coffee shop is, which happens to have paid whoever makes your phone, at the right moment. ... We are possibly facing little tiny bits of manipulation in all of our waking hours, if we don't have that already.\u003c/p>\n\u003cp>\u003cstrong>On how Facebook \"likes\" help advertisers \u003c/strong>\u003c/p>\n\u003cp>Every time you click on a \"like\" button on another site, you've told Facebook that you're doing that, and so therefore advertisers know who their fan base is. When you decide to \"like\" something you may feel you're innocently putting out your preferences, but actually you're delivering something of enormous value, which is indicating that you essentially like to be advertised to by this company.\u003c/p>\n\u003cp>It's so funny that the Internet has become a series of traps where you do innocent things like give your name or address or indicate a preference — \"I like this thing\" — and therefore you open yourself up to a deluge of advertising based on those stated preferences. That's what you're doing, you're signaling who you are as a consumer.\u003c/p>\n\u003cp>\u003cstrong>On what can happen when Internet companies know intimate details about individuals\u003c/strong>\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>I'm concerned with our autonomy. ... I particularly don't like it when it's used to exploit your weaknesses or make you lose control in some ways — so it's like advertising casinos to people who have gambling problems, or just things that are too sensitive — if you have a disease and suddenly you started getting ads for cures for that disease, it's an embarrassing disease. All that kind of stuff, it just gets into that zone of autonomy or privacy where you feel a sense of freedom to be who you want to be, and I'm afraid when too many people know too much about you, it actually makes us all a lot more boring, because you're afraid to express yourself.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 Fresh Air. To see more, visit \u003ca href=\"http://www.npr.org/programs/fresh-air/\">Fresh Air\u003c/a>.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=How+Free+Web+Content+Traps+People+In+An+Abyss+Of+Ads+And+Clickbait&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>If you feel like Internet ads are more pervasive and invasive than ever before, you're not alone. Author Tim Wu tells \"Fresh Air's\" Terry Gross that the Web has gotten worse over the years, not better — and unrelenting ads are to blame.\u003c/p>\n\u003cp>\"I think you spend 50 percent of your mental energy trying to defeat ad systems,\" Wu says. \"It's amazing that we've got this great scientific invention, the Web and the Internet, and then it has come to the point where using it reminds me of swatting mosquitoes.\"\u003c/p>\n\u003cp>As a professor at Columbia Law School, Wu became known as \u003ca href=\"http://www.npr.org/2014/04/24/306542099/what-do-net-neutrality-rules-mean-for-web-users\" target=\"_blank\">an open Internet advocate\u003c/a> who is credited with coining the term \"\u003ca href=\"http://www.npr.org/sections/alltechconsidered/2014/07/21/333737282/net-neutrality-shall-i-compare-thee-to-a-highway-a-showerhead\" target=\"_blank\">net neutrality\u003c/a>.\" His new book, \u003cem>The Attention Merchants,\u003c/em> examines how advertising has changed the Internet — and how those changes affect us.\u003c/p>\n\u003cp>He says the book was inspired by his own experience of sitting down to look something up on the computer and finding, four hours later, that he had slid into a world of digital distraction. \"It's what I call the casino effect,\" Wu says. \"It's this effort of the environment to make you lose control of your sense of time and your attention kind of gets dragged away.\"\u003c/p>\n\u003cp>Wu points out that much of the \"free\" content on the Internet comes at a price to users, who are subjected to ads that are targeted specifically at them and which are increasingly difficult to ignore or close. \"Google, Facebook, Twitter — the whole set of companies essentially knows all your weaknesses and essentially how to manipulate you in subtle ways in order to have you do things you might not otherwise do,\" he says.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Wu says that although the Internet is full of \"clickbait that brings ads along like a bad cold,\" it doesn't have to be that way. \"We can have a better Web,\" he says. \"Whether it's a combination of subscription models or nonprofit models, I would like to have a Web that we feel proud of, that lives up to its promise.\"\u003c/p>\n\u003chr>\n\u003cp>\u003cstrong>Interview Highlights\u003c/strong>\u003c/p>\n\u003cp>\u003cstrong>On \u003c/strong>\u003cstrong>the quest for clicks\u003c/strong>\u003c/p>\n\u003cp>It's inherent to the business model. It's very driven with the need to grow, to get more clicks and clicks and clicks. And some of this book is about the history, and we often say that ratings kind of ruined television in the 1950s, well, the quest for ratings looks dignified in comparison to the quest for clicks.\u003c/p>\n\u003cp>So much engineering talent and ability has gone into trying to make people click on things that I think we've almost lost the last five years of development. It's been very disappointing.\u003c/p>\n\u003cp>\u003cstrong>On how we are used to content being free\u003c/strong>\u003c/p>\n\u003cp>It's a bargain with some historical precedent. I think back starting with radio, starting with television, we got used to this idea of stuff being free as long as you just watch a few ads. ...\u003c/p>\n\u003cp>This attention-merchant model has spread to so many areas of our life, where we're completely used to everything being free. But then the payoff, or the exchange, is that then we also agree to stuff that is compromised, because it is always trying to get us to click on ads at the same time. So we have this bargain that we made — and you can call it Faustian, you can call it whatever you want — that we have decided that we have to have everything for free, and I think we're starting to pay for it in terms of our mental states.\u003c/p>\n\u003cp>\u003cstrong>On \u003c/strong>\u003cstrong>the price of 'free' Internet content \u003c/strong>\u003c/p>\n\u003cp>If you really want change in this area, and you want to act, you probably have to pay for stuff, pay for content. Some people are like, \"Oh my God I have to pay?\" But people do pay. They pay for Netflix, they pay for HBO, they pay for other types — they subscribe to newspapers sometimes.\u003c/p>\n\u003cp>Generally speaking, when you pay for stuff it has more of your interests at heart. ... In other words, a lot of the websites are always serving two masters, they're both trying to get you entertained enough to stay there, or to click on things, but to also then make it a good platform for advertising. So I have sort of a plea to people who want to change these sort of things is, like, maybe just suck it up and start paying for more stuff.\u003c/p>\n\u003cp>\u003cstrong>On the pervasiveness of Internet advertising\u003c/strong>\u003c/p>\n\u003cp>In the media, traditional media like print, we had boundaries, we had spaces that ads didn't leave, they stayed where they were on the page, they didn't float around over the text, and we're sort of lost on the Internet.\u003c/p>\n\u003cp>We don't have any barriers. We have a demand for growth that is insistent, and so advertising just keeps getting heavier and heavier and heavier. It doesn't have any natural limit, and we haven't found a place for the limit.\u003c/p>\n\u003cp>\u003cstrong>On Google's approach to advertising\u003c/strong>\u003c/p>\n\u003cp>I think Google is the most profitable attention merchant in the history of the world. ... They started a very idealistic beautiful company in many ways, but they didn't have a business model.\u003c/p>\n\u003cp>The most interesting thing about Google is its founders hated advertising and in fact, they wrote this paper in the '90s, saying in its appendix that any advertising-based search engine would always be corrupted and unable to serve its highest purposes, because advertising always corrupts the goal of the search engine, which is to try to give you the most important stuff, not the stuff someone paid to be there.\u003c/p>\n\u003cp>Google is this conflicted company. I think they thought they could do this deal and keep advertising at bay, but I think year in, year out Google is starting to get worse instead of better. ... You can see it with Google Maps, you can see it with Google Directions where somehow Uber is always one of the options, and it's becoming exactly what they said was what they never wanted, which is a pay-for service where the highest bidder gets the best results. So it's kind of a cautionary tale.\u003c/p>\n\u003cp>I do think the best thing for companies like Google and Facebook, if they are afraid of this ethical trap of advertising, is they should start letting people pay who want to pay and avoid some of the advertising.\u003c/p>\n\u003cp>\u003cstrong>On how advertisers can use technology to target individual \u003c/strong>\u003cstrong>\"moments\"\u003c/strong>\u003c/p>\n\u003cp>I think this is going to become more intense in the coming decade as we start to carry more and more technology with us. We already have our phones, but other wearables and those technologies are going to want to know when you're deciding things and then offer some kind of input, subtle or less so, on that moment.\u003c/p>\n\u003cp>So you know, discovering the moment: Let's say you're someone's phone and you notice that your owner is drinking coffee at certain times of the day, just very subtly indicating where the local coffee shop is, which happens to have paid whoever makes your phone, at the right moment. ... We are possibly facing little tiny bits of manipulation in all of our waking hours, if we don't have that already.\u003c/p>\n\u003cp>\u003cstrong>On how Facebook \"likes\" help advertisers \u003c/strong>\u003c/p>\n\u003cp>Every time you click on a \"like\" button on another site, you've told Facebook that you're doing that, and so therefore advertisers know who their fan base is. When you decide to \"like\" something you may feel you're innocently putting out your preferences, but actually you're delivering something of enormous value, which is indicating that you essentially like to be advertised to by this company.\u003c/p>\n\u003cp>It's so funny that the Internet has become a series of traps where you do innocent things like give your name or address or indicate a preference — \"I like this thing\" — and therefore you open yourself up to a deluge of advertising based on those stated preferences. That's what you're doing, you're signaling who you are as a consumer.\u003c/p>\n\u003cp>\u003cstrong>On what can happen when Internet companies know intimate details about individuals\u003c/strong>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>I'm concerned with our autonomy. ... I particularly don't like it when it's used to exploit your weaknesses or make you lose control in some ways — so it's like advertising casinos to people who have gambling problems, or just things that are too sensitive — if you have a disease and suddenly you started getting ads for cures for that disease, it's an embarrassing disease. All that kind of stuff, it just gets into that zone of autonomy or privacy where you feel a sense of freedom to be who you want to be, and I'm afraid when too many people know too much about you, it actually makes us all a lot more boring, because you're afraid to express yourself.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 Fresh Air. To see more, visit \u003ca href=\"http://www.npr.org/programs/fresh-air/\">Fresh Air\u003c/a>.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=How+Free+Web+Content+Traps+People+In+An+Abyss+Of+Ads+And+Clickbait&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Pediatrics Org Releases Online Tool To Manage Kids' Media Use",
"title": "Pediatrics Org Releases Online Tool To Manage Kids' Media Use",
"headTitle": "KQED Future of You | KQED Science",
"content": "\u003cp>Whether your kid is 3 and obsessed with Daniel Tiger videos or 15 and spending half her conscious hours on Snapchat, you are probably somewhat conflicted about how to think about their media habits.\u003c/p>\n\u003cp>[contextly_sidebar id=\"ToaVS9hvcyjx3MddUkWr7CPLYS7N3SjF\"]How much time? What kind of media? What should our family's rules be?\u003c/p>\n\u003cp>When the American Academy of Pediatrics released its latest recommendations on these burning questions Friday, it also did something pretty cool: it launched an online tool that parents can use to create their \u003ca href=\"https://www.healthychildren.org/English/media/Pages/default.aspx\">own family media plan\u003c/a>.\u003c/p>\n\u003cp>The interactive tool lets you set guidelines for each child, with suggested items based on the AAP's age-specific recommendations and space to add or substitute your own family's rules. At the end, you can print out a document that lays out your family's own media policy.\u003c/p>\n\u003cp>I went through the process for my 4-year-old daughter a few days ago. It took about five minutes to indicate the screen-free areas and times in our household, specify our device curfews and where they will recharge, how we will watch media with our daughter, what kind of media we'll avoid (unboxing videos) and answer other questions.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>We've certainly had some of these rules in vague form floating around in our heads, but it helps to have something concrete to remind us that there are no screens allowed at the dining room table, in my daughter's bedroom, in the stroller or in the bathroom (\u003ca href=\"http://www.ctadigital.com/item.asp?item=3016\">No iPotty for us\u003c/a>, thanks.)\u003c/p>\n\u003cp>Our plan also includes a list of things we can do more of by decreasing time spent with media, like coloring, going to the library and playing outside. It reminds us about digital safety rules, like reviewing privacy settings on sites our kid may use. And by making these the family's rules, it reminds my husband and me that we need to set a good example ourselves by putting our devices aside at the agreed-upon times and places. (I haven't had a chance to run it by my kid yet, but that's on my list for the weekend.)\u003c/p>\n\u003cp>It's not that a printout is going to automatically change behavior, says \u003ca href=\"http://www.mottchildren.org/profile/4195/jenny-stillwaggon-radesky-md\">Jenny Radesky\u003c/a>, a developmental pediatrician at the University of Michigan's C.S. Mott Children's Hospital and lead author of the AAP's policy statement on media use for young children. But it helps parents lay out their values in advance rather than simply reacting to the latest app or platform.\u003c/p>\n\u003cp>The AAP's updated recommendations are more nuanced than in the past, when the group \u003ca href=\"http://pediatrics.aappublications.org/content/early/2011/10/12/peds.2011-1753\">discouraged any digital media use for children under 2\u003c/a> and recommended \u003ca href=\"https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/Pages/Media-and-Children.aspx\">limiting screen time to two hours or less\u003c/a> for those older than that.\u003c/p>\n\u003cp>Those lines in the sand are \"too simplistic,\" says \u003ca href=\"http://411pediatrics.com/about-us/ari-brown-md-faap/\">Ari Brown\u003c/a>, a pediatrician in private practice in Austin, Texas, and a former member of the AAP's Council on Communications and Media. (She wasn't involved in writing these latest guidelines.)\u003c/p>\n\u003cp>(NPR Ed lead education blogger Anya Kamenetz explains what we know about media use and learning in very young children \u003ca href=\"http://www.npr.org/sections/ed/2016/10/21/498550475/american-academy-of-pediatrics-lifts-no-screens-under-2-rule\">here\u003c/a>.)\u003c/p>\n\u003cp>In fact, the recommendations for elementary school-aged kids and teens don't set any specific time limit. The AAP says that's a decision that depends on the type of media being used and the child using them.\u003c/p>\n\u003cp>But they do say that children and teens' priority should be getting \u003ca href=\"https://www.cdc.gov/physicalactivity/basics/children/\">enough physical activity\u003c/a> (one hour per day), and sleep (8-12 hours). They recommend that kids not sleep with devices in their room, and that they avoid exposure for one hour before bedtime, since that can disrupt sleep.\u003c/p>\n\u003cp>And they make it clear that parents have a huge role in their children' media use, even when they're teenagers. Parents should talk about online citizenship and safety, form a network of trusted adults their kids can engage with on social media, and take an active role in selecting and watching media with their children.\u003c/p>\n\u003cp>So-called \"co-viewing\" is crucial for younger children. \"It should be like reading a book together,\" says \u003ca href=\"http://www.vanderbilt.edu/psychological_sciences/bio/georgene-troseth\">Georgene Troseth\u003c/a>, an associate professor of psychology at Vanderbilt University. \"You should be talking about what you're watching.\" As with books, the goal is to help children compare what they're watching to the real world. That's a valuable skill to work on, since \"that's how adults use media: we use it to get information or to be entertained,\" she says.\u003c/p>\n\u003cp>Still, the AAP says that parents shouldn't feel pressured to buy apps or gadgets because they think kids will be left behind. (They're intuitive enough so that they'll pick them up quickly whenever they start.) \"Your kid doesn't know how to do a Google search when they enter kindergarten,\" says Brown.\u003c/p>\n\u003cp>The bottom line: Your family's media policy should be informed by your own values and intuition as well as what the science says.\u003c/p>\n\u003cp>\"I want parents to trust their gut,\" says Radesky. \"If they're sitting with a child [using media] and the child is liking it and seeming to be learning something, that kind of a test is totally great.\" And if you decide you'd rather ditch all devices in your house, that's fine too. \"We support that 100 percent,\" she says. \"Your child is not missing out on anything.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>Katherine Hobson is a freelance health and science writer based in Brooklyn, N.Y. She's on Twitter: \u003c/em>\u003cem>\u003ca href=\"https://twitter.com/katherinehobson\">@katherinehobson\u003c/a>.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=No+Snapchat+In+The+Bedroom%3F+An+Online+Tool+To+Manage+Kids%27+Media+Use&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Whether your kid is 3 and obsessed with Daniel Tiger videos or 15 and spending half her conscious hours on Snapchat, you are probably somewhat conflicted about how to think about their media habits.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>How much time? What kind of media? What should our family's rules be?\u003c/p>\n\u003cp>When the American Academy of Pediatrics released its latest recommendations on these burning questions Friday, it also did something pretty cool: it launched an online tool that parents can use to create their \u003ca href=\"https://www.healthychildren.org/English/media/Pages/default.aspx\">own family media plan\u003c/a>.\u003c/p>\n\u003cp>The interactive tool lets you set guidelines for each child, with suggested items based on the AAP's age-specific recommendations and space to add or substitute your own family's rules. At the end, you can print out a document that lays out your family's own media policy.\u003c/p>\n\u003cp>I went through the process for my 4-year-old daughter a few days ago. It took about five minutes to indicate the screen-free areas and times in our household, specify our device curfews and where they will recharge, how we will watch media with our daughter, what kind of media we'll avoid (unboxing videos) and answer other questions.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>We've certainly had some of these rules in vague form floating around in our heads, but it helps to have something concrete to remind us that there are no screens allowed at the dining room table, in my daughter's bedroom, in the stroller or in the bathroom (\u003ca href=\"http://www.ctadigital.com/item.asp?item=3016\">No iPotty for us\u003c/a>, thanks.)\u003c/p>\n\u003cp>Our plan also includes a list of things we can do more of by decreasing time spent with media, like coloring, going to the library and playing outside. It reminds us about digital safety rules, like reviewing privacy settings on sites our kid may use. And by making these the family's rules, it reminds my husband and me that we need to set a good example ourselves by putting our devices aside at the agreed-upon times and places. (I haven't had a chance to run it by my kid yet, but that's on my list for the weekend.)\u003c/p>\n\u003cp>It's not that a printout is going to automatically change behavior, says \u003ca href=\"http://www.mottchildren.org/profile/4195/jenny-stillwaggon-radesky-md\">Jenny Radesky\u003c/a>, a developmental pediatrician at the University of Michigan's C.S. Mott Children's Hospital and lead author of the AAP's policy statement on media use for young children. But it helps parents lay out their values in advance rather than simply reacting to the latest app or platform.\u003c/p>\n\u003cp>The AAP's updated recommendations are more nuanced than in the past, when the group \u003ca href=\"http://pediatrics.aappublications.org/content/early/2011/10/12/peds.2011-1753\">discouraged any digital media use for children under 2\u003c/a> and recommended \u003ca href=\"https://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/Pages/Media-and-Children.aspx\">limiting screen time to two hours or less\u003c/a> for those older than that.\u003c/p>\n\u003cp>Those lines in the sand are \"too simplistic,\" says \u003ca href=\"http://411pediatrics.com/about-us/ari-brown-md-faap/\">Ari Brown\u003c/a>, a pediatrician in private practice in Austin, Texas, and a former member of the AAP's Council on Communications and Media. (She wasn't involved in writing these latest guidelines.)\u003c/p>\n\u003cp>(NPR Ed lead education blogger Anya Kamenetz explains what we know about media use and learning in very young children \u003ca href=\"http://www.npr.org/sections/ed/2016/10/21/498550475/american-academy-of-pediatrics-lifts-no-screens-under-2-rule\">here\u003c/a>.)\u003c/p>\n\u003cp>In fact, the recommendations for elementary school-aged kids and teens don't set any specific time limit. The AAP says that's a decision that depends on the type of media being used and the child using them.\u003c/p>\n\u003cp>But they do say that children and teens' priority should be getting \u003ca href=\"https://www.cdc.gov/physicalactivity/basics/children/\">enough physical activity\u003c/a> (one hour per day), and sleep (8-12 hours). They recommend that kids not sleep with devices in their room, and that they avoid exposure for one hour before bedtime, since that can disrupt sleep.\u003c/p>\n\u003cp>And they make it clear that parents have a huge role in their children' media use, even when they're teenagers. Parents should talk about online citizenship and safety, form a network of trusted adults their kids can engage with on social media, and take an active role in selecting and watching media with their children.\u003c/p>\n\u003cp>So-called \"co-viewing\" is crucial for younger children. \"It should be like reading a book together,\" says \u003ca href=\"http://www.vanderbilt.edu/psychological_sciences/bio/georgene-troseth\">Georgene Troseth\u003c/a>, an associate professor of psychology at Vanderbilt University. \"You should be talking about what you're watching.\" As with books, the goal is to help children compare what they're watching to the real world. That's a valuable skill to work on, since \"that's how adults use media: we use it to get information or to be entertained,\" she says.\u003c/p>\n\u003cp>Still, the AAP says that parents shouldn't feel pressured to buy apps or gadgets because they think kids will be left behind. (They're intuitive enough so that they'll pick them up quickly whenever they start.) \"Your kid doesn't know how to do a Google search when they enter kindergarten,\" says Brown.\u003c/p>\n\u003cp>The bottom line: Your family's media policy should be informed by your own values and intuition as well as what the science says.\u003c/p>\n\u003cp>\"I want parents to trust their gut,\" says Radesky. \"If they're sitting with a child [using media] and the child is liking it and seeming to be learning something, that kind of a test is totally great.\" And if you decide you'd rather ditch all devices in your house, that's fine too. \"We support that 100 percent,\" she says. \"Your child is not missing out on anything.\"\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>Katherine Hobson is a freelance health and science writer based in Brooklyn, N.Y. She's on Twitter: \u003c/em>\u003cem>\u003ca href=\"https://twitter.com/katherinehobson\">@katherinehobson\u003c/a>.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=No+Snapchat+In+The+Bedroom%3F+An+Online+Tool+To+Manage+Kids%27+Media+Use&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Researchers have discovered a piece in the puzzle of how the Zika virus spreads in human cells and neutralizes the body’s defenses.\u003c/p>\n\u003cp>A study by scientists at the University of California, San Diego School of Medicine answered a fundamental question posed by biologists: What happens when the virus enters a human cell?\u003c/p>\n\u003cp>Zika infections lead to modifications in the genetic material of both the virus itself and humans’ immune systems, influencing the virus’ spread and the body’s immune response, according to the researchers. Their study was published last week in \u003cem>Cell Host & Microbe\u003c/em>.\u003c/p>\n\u003cp>While humans’ genetic material is made up of DNA and RNA, some viruses’ genomes — including Zika and HIV — are comprised only of RNA. In humans, RNA carries genetic information from DNA to create new cells.\u003c/p>\n\u003cp>Researchers found that when the Zika virus infected a human cell, the cell modified viral RNA to get rid of the infection. But that adaptation triggered human enzymes that may have impacted the cell’s protective shield. The Zika infection also induced modifications on human RNA, according to the study.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Changing viral RNA let the virus “hide in plain sight,” said Tariq Rana, the lead author of the study and a professor of pediatrics at UC San Diego.\u003c/p>\n\u003cp>That discovery probably won’t help find a vaccine for Zika, but it could contribute to the discovery of drugs to prevent birth defects in some babies born to women who contracted the virus while pregnant, said Dr. Peter Hotez, dean of the National School of Tropical Medicine at Baylor College of Medicine in Houston. He was not involved in the study.\u003c/p>\n\u003cp>It might also help scientists develop drugs in the future that can specifically target and stop Zika from changing RNA, Rana said.\u003c/p>\n\u003cp>And understanding how Zika changes RNA opens the door to studying when fetuses are harmed during pregnancies and what potential risk factors may be, said Amesh Adalja, a senior associate at the Center for Health Security, part of the University of Pittsburgh Medical Center.\u003c/p>\n\u003cp>The research may be a key to understanding how Zika causes so much damage to a developing fetus, said Adalja, who was also not part of the study.\u003c/p>\n\u003cp>“What you’re seeing with Zika is science progressing at breakneck speed to discover mysteries about this virus that no one paid attention to for decades and decades,” Adalja said.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Changing viral RNA let the virus “hide in plain sight,” said Tariq Rana, the lead author of the study and a professor of pediatrics at UC San Diego.\u003c/p>\n\u003cp>That discovery probably won’t help find a vaccine for Zika, but it could contribute to the discovery of drugs to prevent birth defects in some babies born to women who contracted the virus while pregnant, said Dr. Peter Hotez, dean of the National School of Tropical Medicine at Baylor College of Medicine in Houston. He was not involved in the study.\u003c/p>\n\u003cp>It might also help scientists develop drugs in the future that can specifically target and stop Zika from changing RNA, Rana said.\u003c/p>\n\u003cp>And understanding how Zika changes RNA opens the door to studying when fetuses are harmed during pregnancies and what potential risk factors may be, said Amesh Adalja, a senior associate at the Center for Health Security, part of the University of Pittsburgh Medical Center.\u003c/p>\n\u003cp>The research may be a key to understanding how Zika causes so much damage to a developing fetus, said Adalja, who was also not part of the study.\u003c/p>\n\u003cp>“What you’re seeing with Zika is science progressing at breakneck speed to discover mysteries about this virus that no one paid attention to for decades and decades,” Adalja said.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp class=\"p1\">This year marks an anniversary that in all probability flew under your radar: The iPSC is 10-years-old.\u003c/p>\n\u003cp class=\"p1\">Great! you say. What's that, some sort of mobile fantasy sports league?\u003c/p>\n\u003cp class=\"p1\">Nooo. Would you guess \u003cem>induced pluripotent stem cells? \u003c/em>They're the product of a revolution in stem cell research that helped stem the controversy that was roiling the entire field.\u003c/p>\n\u003caside class=\"pullquote alignright\">'You do not want to be in the position where someone says, ‘I didn't know you were going to do that. I would never agree to that.’'\u003ccite>Hank Greely, Stanford University\u003c/cite>\u003c/aside>\n\u003cp>Prior to the development of iPSCs, stem cells were derived primarily from eggs fertilized in clinics \u003ci>in vitro\u003c/i> that were donated for research purposes. To some, such as President George W. Bush, this was tantamount to abortion. In 2001 he \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2744932/\" target=\"_blank\">banned federal funding\u003c/a> for research on newly created human embryonic stem cell lines. (President Barack Obama \u003ca href=\"http://www.nytimes.com/2009/03/10/us/politics/10stem.html?_r=0\" target=\"_blank\">lifted that ban\u003c/a> in 2009.)\u003c/p>\n\u003cp class=\"p1\">But iPSCs are normal cells, such as skin or blood cells, which have been tinkered with and reprogrammed to revert to an embryonic-like state. They are then capable of reproducing as stem cells or developing into \u003ci>other\u003c/i> types of human cells (pluripotent), such as liver, heart, pancreatic or nerve cells.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp class=\"p1\">So the ability to derive a stem cell without using human embryonic tissue changed the debate about stem cell research ethics.\u003c/p>\n\u003cp class=\"p1\">\u003cstrong>Plenty of Issues\u003c/strong>\u003c/p>\n\u003cp class=\"p1\">But there are still plenty of hot-button topics in the field.\u003c/p>\n\u003cp class=\"p1\">At a recent gathering in Berkeley to celebrate “\u003ca href=\"http://www.cell-symposia-ipscs.com/conference-program/\" target=\"_blank\">10 Years of iPSCs\u003c/a>,” a panel of researchers and leaders kicked off the ethics discussion with comments on how to make sure researchers get proper permissions from human subjects who sign up for clinical trials. Some members of the public might be surprised what a controversial topic “informed consent” can be.\u003c/p>\n\u003cp class=\"p1\">“Everyone wants to avoid a HeLa situation,” said \u003ca href=\"https://www.lumc.nl/org/anatomie-embriologie/medewerkers/902201040032533?setlanguage=English&setcountry=en\" target=\"_blank\">Christine Mummery,\u003c/a> of the Leiden University Medical Centr\u003ca href=\"https://www.lumc.nl/org/anatomie-embriologie/medewerkers/902201040032533?setlanguage=English&setcountry=en\" target=\"_blank\">e\u003c/a> in the Netherlands, referring to the oldest and most commonly used cell line in research.\u003c/p>\n\u003cfigure id=\"attachment_262544\" class=\"wp-caption aligncenter\" style=\"max-width: 2400px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/HeLa_cells_1.jpg\">\u003cimg class=\"size-full wp-image-262544\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/HeLa_cells_1.jpg\" alt=\"Cultured HeLa cells.\" width=\"2400\" height=\"1999\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/HeLa_cells_1.jpg 2400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/HeLa_cells_1-400x333.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/HeLa_cells_1-720x600.jpg 720w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/HeLa_cells_1-768x640.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/HeLa_cells_1-1180x983.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/HeLa_cells_1-1920x1599.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/HeLa_cells_1-960x800.jpg 960w\" sizes=\"(max-width: 2400px) 100vw, 2400px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Cultured HeLa cells. \u003ccite>(National Center for Microscopy and Imaging Research)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>HeLa cells were taken, without permission, from Henrietta Lacks, a patient who died of cervical cancer in 1951\u003cstrong>.\u003c/strong> For reasons no one knows, her cells were the first that could grow “immortally” in a lab, without dying after a few days. Her cells helped test Jonas Salk’s polio vaccine, have been used to research AIDS, cancer, toxic substances, gene mapping, stem cells and much more.\u003c/p>\n\u003cp class=\"p1\">Yet the absence of any consent whatsoever caused immense distress to the Lacks family, once they learned of the appropriation of Henrietta's cells.\u003c/p>\n\u003cp class=\"p1\">“The family has been through a lot with HeLa: they didn’t learn of the cells until 20 years after Lacks’s death, when scientists began using her children in research without their knowledge,” \u003ca href=\"http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-henrietta-lacks-the-sequel.html\" target=\"_blank\">wrote Rebecca Skloot\u003c/a>, author of \"The Immortal Life of Henrietta Lacks,\" in the New York Times.\u003ci> \"\u003c/i>Later their medical records were released to the press and published without consent.\" (Skloot makes an appearance in a \u003ca href=\"https://www.youtube.com/watch?v=ej0b7GHGYjs\" target=\"_blank\">rap ballad\u003c/a> about the HeLa cells and the Lacks family, written and performed by Oakland 7th and 8th graders on YouTube this month.)\u003c/p>\n\u003cp class=\"p1\">[contextly_sidebar id=\"QHgtAgdTB2KPycAd1HHOyHGUjvFlbxS7\"]Adding insult to injury, researchers in 2013 published the HeLa genome without family consent. (This was not illegal but, in the views of modern medical ethics, extremely dicey.)\u003c/p>\n\u003cp class=\"p1\">Panelist \u003ca href=\"https://law.stanford.edu/directory/henry-t-greely/\" target=\"_blank\">Hank Greely, \u003c/a>a bioethicist at Stanford University, advised the gathered researchers, “You do not want to be in the position where someone says, ‘I didn't know you were going to do that. I would never agree to that.’\u003c/p>\n\u003cp class=\"p1\">“Not so much for the legal reasons, though those can be significant,\" he said. \"More because of the political fallout that can come to you and your institution. It could also do damage to the whole stem cell enterprise.”\u003c/p>\n\u003cp class=\"p1\">\u003ca href=\"https://daley.med.harvard.edu/\" target=\"_blank\">George Daley\u003c/a>, of the Children’s Hospital Boston and Harvard Medical School, pointed the audience toward recently revised guidelines from the International Society for Stem Cell Research, which offers \u003ca href=\"http://www.isscr.org/home/publications/guide-clintrans/sample-consent-documents\" target=\"_blank\">templates for informed consent forms\u003c/a>. These include language like this:\u003c/p>\n\u003cp class=\"p1\">\u003cem>Donating your _____ cells for this research project is completely voluntary. You have the right to agree or to refuse to provide your _____ cells for this project. The quality of your current or future medical care and your relationship with [name(s) of institution(s)] will NOT change in any way whether you agree or refuse to provide any cells for this research project.\u003c/em>\u003c/p>\n\u003cp class=\"p1\">\u003cstrong>The Issue of Money\u003c/strong>\u003c/p>\n\u003caside class=\"pullquote alignright\">Is it ethical to charge patients to participate in a study? No, was the consensus.\u003c/aside>\n\u003cp>“What happens if someone has a drug based on their genes or cells?” the moderator asked.\u003c/p>\n\u003cp class=\"p1\">“That doesn't happen very often,” said Greely. “Most of the time discoveries are the results of work with tens of thousands or more people.”\u003c/p>\n\u003cp class=\"p1\">But, he conceded, every once in a while a patient comes along with unusual cells or genes that can be the basis for a drug. In that case, he said, a researcher must first and foremost follow whatever they said they’d do in the consent forms.\u003c/p>\n\u003cp class=\"p1\">“But even if you didn't promise them anything in the consent process,” he said, “if someone is making lots of money,\u003cspan class=\"Apple-converted-space\"> \u003c/span>I think frankly it’s a good idea to try to return something.”\u003cspan class=\"Apple-converted-space\"> \u003c/span>\u003c/p>\n\u003cfigure id=\"attachment_262548\" class=\"wp-caption aligncenter\" style=\"max-width: 1024px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/iPScells2.jpg\">\u003cimg class=\"size-full wp-image-262548\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/iPScells2.jpg\" alt=\"These induced pluripotent stem cells were derived from a woman's skin. Blue shows nuclei. Green shows a protein found in iPS cells but not in skin cells. The red dots show the inactivated X chromosome in each cell. \" width=\"1024\" height=\"765\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/iPScells2.jpg 1024w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/iPScells2-400x299.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/iPScells2-800x598.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/iPScells2-768x574.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/iPScells2-960x717.jpg 960w\" sizes=\"(max-width: 1024px) 100vw, 1024px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">These induced pluripotent stem cells were derived from a woman's skin. Blue shows nuclei. Green shows a protein found in iPS cells but not in skin cells. The red dots show the inactivated X chromosome in each cell. \u003ccite>(Kathrin Plath lab/UCLA via CIRM, NIH)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp class=\"p1\">He added that this probably doesn't mean offering royalties, which could foster overblown hopes for study participants. Greely likened it to hyping lottery tickets with very bad odds. Instead, he recommends thinking about a person's community, perhaps donating to causes dear to them. Even simple recognition, he says, is important.\u003c/p>\n\u003cp class=\"p1\">“I was involved in the\u003ca href=\"http://www.nature.com/news/deal-done-over-hela-cell-line-1.13511\" target=\"_blank\"> HeLa resolution\u003c/a> a few years ago,” he said,\u003cspan class=\"Apple-converted-space\"> \u003c/span>“and the Lacks descendants are really quite proud and pleased that their mother, grandmother and great grandmother is being remembered ... and that they are consulted on various things.”\u003c/p>\n\u003cp class=\"p1\">Continuing on the topic of money, the moderator asked what panelists thought about the ethics of paying tissue donors?\u003c/p>\n\u003cp class=\"p1\">On this, the panel seemed united, “As long as it’s a reasonable reimbursement for the pain and suffering, I think it’s hard to make a case against it,” offered \u003ca href=\"https://www.mskcc.org/research-areas/labs/members/lorenz-studer\" target=\"_blank\">Lorenz Studer\u003c/a>, of the Memorial Sloan Kettering Cancer Center. If the amount offered is so high that it becomes an “undue inducement,” said Greely, then it’s a problem.\u003c/p>\n\u003cp class=\"p1\">“Many patients are willing to pay for a treatment that’s unproven. What do you think about the ethics of patients paying to be in a trial?” asked the moderator, acknowledging that many people with serious diseases are desperate to be involved in the latest research and that clinical research is extraordinarily expensive to fund.\u003c/p>\n\u003cp class=\"p1\">No, was the general consensus.\u003c/p>\n\u003cp class=\"p1\">That means people in a control group would be paying for a placebo, Greely noted, and someone desperate to be in a trial might not be making a level-headed decision.\u003c/p>\n\u003cp class=\"p1\">“The simple fact that they’re willing to pay corrupts the informed consent process,\" he said. \"And there is a social justice aspect -- if someone can pay for a trial that’s not an equal distribution of good.”\u003c/p>\n\u003cp class=\"p1\">Someone from the audience chimed in with a question that once would have been relegated to the realm of science fiction: “What are the ethics of designing organs?”\u003c/p>\n\u003cp class=\"p2\">“Think about this with a heart,” said \u003ca href=\"http://profiles.ucsf.edu/deepak.srivastava\" target=\"_blank\">Deepak Srivastava\u003c/a> of the Gladstone Institutes and University of California, San Francisco. “It’s just a pump. I think going forward that we should remove the constraints of the design. What we have may or may not be the best thing in evolution.”\u003c/p>\n\u003cp class=\"p2\">But, said Greely, “Many people would be viscerally upset about the idea of changing ourselves, changing our species.\" So scientists should temper their desire to move quickly.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp class=\"p2\">“If there is one thing I've learned from being around biology for 25 years, it’s that biology is not the same as design,\" Greely said. \"Biology is really complicated! Engineers who design something expect it to work. But if you put something [designed] into an organism, the chances that something odd will happen are extremely high. You have to be extremely careful to avoid making things worse.”\u003c/p>\n\n",
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"excerpt": "At a celebration of the 10-year anniversary of induced pluripotent stem cells, scientists engaged in a discussion on hot-button issues.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp class=\"p1\">This year marks an anniversary that in all probability flew under your radar: The iPSC is 10-years-old.\u003c/p>\n\u003cp class=\"p1\">Great! you say. What's that, some sort of mobile fantasy sports league?\u003c/p>\n\u003cp class=\"p1\">Nooo. Would you guess \u003cem>induced pluripotent stem cells? \u003c/em>They're the product of a revolution in stem cell research that helped stem the controversy that was roiling the entire field.\u003c/p>\n\u003caside class=\"pullquote alignright\">'You do not want to be in the position where someone says, ‘I didn't know you were going to do that. I would never agree to that.’'\u003ccite>Hank Greely, Stanford University\u003c/cite>\u003c/aside>\n\u003cp>Prior to the development of iPSCs, stem cells were derived primarily from eggs fertilized in clinics \u003ci>in vitro\u003c/i> that were donated for research purposes. To some, such as President George W. Bush, this was tantamount to abortion. In 2001 he \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2744932/\" target=\"_blank\">banned federal funding\u003c/a> for research on newly created human embryonic stem cell lines. (President Barack Obama \u003ca href=\"http://www.nytimes.com/2009/03/10/us/politics/10stem.html?_r=0\" target=\"_blank\">lifted that ban\u003c/a> in 2009.)\u003c/p>\n\u003cp class=\"p1\">But iPSCs are normal cells, such as skin or blood cells, which have been tinkered with and reprogrammed to revert to an embryonic-like state. They are then capable of reproducing as stem cells or developing into \u003ci>other\u003c/i> types of human cells (pluripotent), such as liver, heart, pancreatic or nerve cells.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp class=\"p1\">So the ability to derive a stem cell without using human embryonic tissue changed the debate about stem cell research ethics.\u003c/p>\n\u003cp class=\"p1\">\u003cstrong>Plenty of Issues\u003c/strong>\u003c/p>\n\u003cp class=\"p1\">But there are still plenty of hot-button topics in the field.\u003c/p>\n\u003cp class=\"p1\">At a recent gathering in Berkeley to celebrate “\u003ca href=\"http://www.cell-symposia-ipscs.com/conference-program/\" target=\"_blank\">10 Years of iPSCs\u003c/a>,” a panel of researchers and leaders kicked off the ethics discussion with comments on how to make sure researchers get proper permissions from human subjects who sign up for clinical trials. Some members of the public might be surprised what a controversial topic “informed consent” can be.\u003c/p>\n\u003cp class=\"p1\">“Everyone wants to avoid a HeLa situation,” said \u003ca href=\"https://www.lumc.nl/org/anatomie-embriologie/medewerkers/902201040032533?setlanguage=English&setcountry=en\" target=\"_blank\">Christine Mummery,\u003c/a> of the Leiden University Medical Centr\u003ca href=\"https://www.lumc.nl/org/anatomie-embriologie/medewerkers/902201040032533?setlanguage=English&setcountry=en\" target=\"_blank\">e\u003c/a> in the Netherlands, referring to the oldest and most commonly used cell line in research.\u003c/p>\n\u003cfigure id=\"attachment_262544\" class=\"wp-caption aligncenter\" style=\"max-width: 2400px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/HeLa_cells_1.jpg\">\u003cimg class=\"size-full wp-image-262544\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/HeLa_cells_1.jpg\" alt=\"Cultured HeLa cells.\" width=\"2400\" height=\"1999\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/HeLa_cells_1.jpg 2400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/HeLa_cells_1-400x333.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/HeLa_cells_1-720x600.jpg 720w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/HeLa_cells_1-768x640.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/HeLa_cells_1-1180x983.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/HeLa_cells_1-1920x1599.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/HeLa_cells_1-960x800.jpg 960w\" sizes=\"(max-width: 2400px) 100vw, 2400px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Cultured HeLa cells. \u003ccite>(National Center for Microscopy and Imaging Research)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>HeLa cells were taken, without permission, from Henrietta Lacks, a patient who died of cervical cancer in 1951\u003cstrong>.\u003c/strong> For reasons no one knows, her cells were the first that could grow “immortally” in a lab, without dying after a few days. Her cells helped test Jonas Salk’s polio vaccine, have been used to research AIDS, cancer, toxic substances, gene mapping, stem cells and much more.\u003c/p>\n\u003cp class=\"p1\">Yet the absence of any consent whatsoever caused immense distress to the Lacks family, once they learned of the appropriation of Henrietta's cells.\u003c/p>\n\u003cp class=\"p1\">“The family has been through a lot with HeLa: they didn’t learn of the cells until 20 years after Lacks’s death, when scientists began using her children in research without their knowledge,” \u003ca href=\"http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-life-of-henrietta-lacks-the-sequel.html\" target=\"_blank\">wrote Rebecca Skloot\u003c/a>, author of \"The Immortal Life of Henrietta Lacks,\" in the New York Times.\u003ci> \"\u003c/i>Later their medical records were released to the press and published without consent.\" (Skloot makes an appearance in a \u003ca href=\"https://www.youtube.com/watch?v=ej0b7GHGYjs\" target=\"_blank\">rap ballad\u003c/a> about the HeLa cells and the Lacks family, written and performed by Oakland 7th and 8th graders on YouTube this month.)\u003c/p>\n\u003cp class=\"p1\">\u003c/p>\u003cp>\u003c/p>\u003cp>Adding insult to injury, researchers in 2013 published the HeLa genome without family consent. (This was not illegal but, in the views of modern medical ethics, extremely dicey.)\u003c/p>\n\u003cp class=\"p1\">Panelist \u003ca href=\"https://law.stanford.edu/directory/henry-t-greely/\" target=\"_blank\">Hank Greely, \u003c/a>a bioethicist at Stanford University, advised the gathered researchers, “You do not want to be in the position where someone says, ‘I didn't know you were going to do that. I would never agree to that.’\u003c/p>\n\u003cp class=\"p1\">“Not so much for the legal reasons, though those can be significant,\" he said. \"More because of the political fallout that can come to you and your institution. It could also do damage to the whole stem cell enterprise.”\u003c/p>\n\u003cp class=\"p1\">\u003ca href=\"https://daley.med.harvard.edu/\" target=\"_blank\">George Daley\u003c/a>, of the Children’s Hospital Boston and Harvard Medical School, pointed the audience toward recently revised guidelines from the International Society for Stem Cell Research, which offers \u003ca href=\"http://www.isscr.org/home/publications/guide-clintrans/sample-consent-documents\" target=\"_blank\">templates for informed consent forms\u003c/a>. These include language like this:\u003c/p>\n\u003cp class=\"p1\">\u003cem>Donating your _____ cells for this research project is completely voluntary. You have the right to agree or to refuse to provide your _____ cells for this project. The quality of your current or future medical care and your relationship with [name(s) of institution(s)] will NOT change in any way whether you agree or refuse to provide any cells for this research project.\u003c/em>\u003c/p>\n\u003cp class=\"p1\">\u003cstrong>The Issue of Money\u003c/strong>\u003c/p>\n\u003caside class=\"pullquote alignright\">Is it ethical to charge patients to participate in a study? No, was the consensus.\u003c/aside>\n\u003cp>“What happens if someone has a drug based on their genes or cells?” the moderator asked.\u003c/p>\n\u003cp class=\"p1\">“That doesn't happen very often,” said Greely. “Most of the time discoveries are the results of work with tens of thousands or more people.”\u003c/p>\n\u003cp class=\"p1\">But, he conceded, every once in a while a patient comes along with unusual cells or genes that can be the basis for a drug. In that case, he said, a researcher must first and foremost follow whatever they said they’d do in the consent forms.\u003c/p>\n\u003cp class=\"p1\">“But even if you didn't promise them anything in the consent process,” he said, “if someone is making lots of money,\u003cspan class=\"Apple-converted-space\"> \u003c/span>I think frankly it’s a good idea to try to return something.”\u003cspan class=\"Apple-converted-space\"> \u003c/span>\u003c/p>\n\u003cfigure id=\"attachment_262548\" class=\"wp-caption aligncenter\" style=\"max-width: 1024px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/iPScells2.jpg\">\u003cimg class=\"size-full wp-image-262548\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/iPScells2.jpg\" alt=\"These induced pluripotent stem cells were derived from a woman's skin. Blue shows nuclei. Green shows a protein found in iPS cells but not in skin cells. The red dots show the inactivated X chromosome in each cell. \" width=\"1024\" height=\"765\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/iPScells2.jpg 1024w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/iPScells2-400x299.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/iPScells2-800x598.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/iPScells2-768x574.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/iPScells2-960x717.jpg 960w\" sizes=\"(max-width: 1024px) 100vw, 1024px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">These induced pluripotent stem cells were derived from a woman's skin. Blue shows nuclei. Green shows a protein found in iPS cells but not in skin cells. The red dots show the inactivated X chromosome in each cell. \u003ccite>(Kathrin Plath lab/UCLA via CIRM, NIH)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp class=\"p1\">He added that this probably doesn't mean offering royalties, which could foster overblown hopes for study participants. Greely likened it to hyping lottery tickets with very bad odds. Instead, he recommends thinking about a person's community, perhaps donating to causes dear to them. Even simple recognition, he says, is important.\u003c/p>\n\u003cp class=\"p1\">“I was involved in the\u003ca href=\"http://www.nature.com/news/deal-done-over-hela-cell-line-1.13511\" target=\"_blank\"> HeLa resolution\u003c/a> a few years ago,” he said,\u003cspan class=\"Apple-converted-space\"> \u003c/span>“and the Lacks descendants are really quite proud and pleased that their mother, grandmother and great grandmother is being remembered ... and that they are consulted on various things.”\u003c/p>\n\u003cp class=\"p1\">Continuing on the topic of money, the moderator asked what panelists thought about the ethics of paying tissue donors?\u003c/p>\n\u003cp class=\"p1\">On this, the panel seemed united, “As long as it’s a reasonable reimbursement for the pain and suffering, I think it’s hard to make a case against it,” offered \u003ca href=\"https://www.mskcc.org/research-areas/labs/members/lorenz-studer\" target=\"_blank\">Lorenz Studer\u003c/a>, of the Memorial Sloan Kettering Cancer Center. If the amount offered is so high that it becomes an “undue inducement,” said Greely, then it’s a problem.\u003c/p>\n\u003cp class=\"p1\">“Many patients are willing to pay for a treatment that’s unproven. What do you think about the ethics of patients paying to be in a trial?” asked the moderator, acknowledging that many people with serious diseases are desperate to be involved in the latest research and that clinical research is extraordinarily expensive to fund.\u003c/p>\n\u003cp class=\"p1\">No, was the general consensus.\u003c/p>\n\u003cp class=\"p1\">That means people in a control group would be paying for a placebo, Greely noted, and someone desperate to be in a trial might not be making a level-headed decision.\u003c/p>\n\u003cp class=\"p1\">“The simple fact that they’re willing to pay corrupts the informed consent process,\" he said. \"And there is a social justice aspect -- if someone can pay for a trial that’s not an equal distribution of good.”\u003c/p>\n\u003cp class=\"p1\">Someone from the audience chimed in with a question that once would have been relegated to the realm of science fiction: “What are the ethics of designing organs?”\u003c/p>\n\u003cp class=\"p2\">“Think about this with a heart,” said \u003ca href=\"http://profiles.ucsf.edu/deepak.srivastava\" target=\"_blank\">Deepak Srivastava\u003c/a> of the Gladstone Institutes and University of California, San Francisco. “It’s just a pump. I think going forward that we should remove the constraints of the design. What we have may or may not be the best thing in evolution.”\u003c/p>\n\u003cp class=\"p2\">But, said Greely, “Many people would be viscerally upset about the idea of changing ourselves, changing our species.\" So scientists should temper their desire to move quickly.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp class=\"p2\">“If there is one thing I've learned from being around biology for 25 years, it’s that biology is not the same as design,\" Greely said. \"Biology is really complicated! Engineers who design something expect it to work. But if you put something [designed] into an organism, the chances that something odd will happen are extremely high. You have to be extremely careful to avoid making things worse.”\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Cardiac Patient Aided by Bystanders Who Were Alerted by App",
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"content": "\u003cp>If your heart is going to stop, right outside a hospital is not a bad place for it.\u003c/p>\n\u003cp>And if 41 people within a 330-yard radius have a \u003ca href=\"http://www.pulsepoint.org/\" target=\"_blank\">cellphone app\u003c/a> alerting them to your distress, so much the better.\u003c/p>\n\u003cp>That's what happened in Seattle last week when Stephen DeMont collapsed at a bus stop in front of University of Washington Medical Center.\u003c/p>\n\u003cp>While a medical student rushed over and began chest compressions, a cardiac nurse just getting off her shift was alerted by her phone, sprinted outside and assisted until paramedics arrived.\u003c/p>\n\u003cp>Five days later, DeMont, 60, is walking, smiling and talking about how the PulsePoint app helped save his life.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Seattle officials say the rescue shows the potential a free download has for connecting CPR-trained citizens with patients who urgently need their help. It's being used in 2,000 U.S. cities in 28 states.\u003c/p>\n\u003cp>\"I put it on my phone yesterday,\" said DeMont's wife, Debi Quirk, a former registered nurse. \"He would not be here as we see him today.\"\u003c/p>\n\u003cp>Seattle officials hope DeMont's story will help persuade thousands more people to sign up for notifications; so far, about 4,000 people in Seattle have downloaded PulsePoint since the city adopted it earlier this year with financial support from an employee charitable fund at Boeing. The goal is to have 15,000 using it.\u003c/p>\n\u003cp>The app, which works through a city's 911 system, was developed by Richard Price, the former chief of the San Ramon Valley Fire Protection District in Northern California. When a call comes in, operators alert people within a certain radius that CPR assistance is needed, along with the location of the nearest portable defibrillator.\u003c/p>\n\u003cp>About 900,000 people around the country have downloaded and carry the app, and 34,000 people have been activated to respond, Price said, adding that alerts have been issued in 13,000 cardiac events.\u003c/p>\n\u003cp>He came up with the idea in 2009. Price told KQED in a 2011 \u003ca href=\"http://ww2.kqed.org/news/wp-content/uploads/sites/10/2011/01/cardiaciphoneapp.mp3\" target=\"_blank\">interview\u003c/a> that he'd been eating lunch in a deli with three colleagues, when \"we heard a siren, and we were wondering where the guys were going. They parked right in front of the deli we were eating at.\"\u003c/p>\n\u003cp>As it turned out, an unconscious patient close by was in need of help.\u003c/p>\n\u003cp>\"Here's the fire chief in uniform, a defibrillator in my car. One of my [lunch companions] is a paramedic, and right next door to us, someone was in great need and we were completely unaware of it.\u003c/p>\n\u003cp>\"We sat the the rest of the afternoon and diagrammed on deli napkins how we could make sure that never happened again.\"\u003c/p>\n\u003cp>In that 2011 interview, Price said survival rates for those in cardiac arrest are very high when CPR is used within the first 2-3 minutes after cardiac arrest.\u003c/p>\n\u003cp>It's not clear how many lives have been saved thanks to the app. Patient confidentiality laws often prevent hospitals from disclosing a patient's outcome.\u003c/p>\n\u003cp>Madeline Dahl, a 23-year-old cardiac nurse at the University of Washington Medical Center, said she downloaded the app about a month ago after reading a news story that mentioned it. Last Friday morning was the first time she'd ever received an alert. She bolted down a couple flights of stairs and ran outside into the rain, where she found 27-year-old medical student Zach Forcade performing chest compressions.\u003c/p>\n\u003cp>Forcade had been on his way into the hospital for a lecture when he saw DeMont, who was just getting off his bicycle, slump over.\u003c/p>\n\u003cp>\"I hadn't responded to a cardiac arrest before,\" Forcade said. \"I thought, 'Did he just fall?' ... Even being in the medical field, I thought, 'Oh, man, who's going to step up?'\"\u003c/p>\n\u003cp>He told another passerby to call 911, which triggered an alert sent out to 41 responders nearby. It was reassuring when Dahl arrived to provide any needed backup, help check for a pulse and otherwise make sure Forcade was responding correctly, he said.\u003c/p>\n\u003cp>For DeMont, it was about more than just being lucky. A contract technical writer at Expedia, he said he has a love-hate relationship with technology — \"You see all these things about people falling off cliffs texting, people are so disconnected\" — but the response from Forcade, Dahl and the use of PulsePoint reaffirmed his belief in its power to make a positive difference.\u003c/p>\n\u003cp>\"There's hope,\" DeMont said.\u003c/p>\n\u003cp>He's due to have a defibrillator implanted on Thursday. Now he just has to figure out how to pay the $100,000 tab without insurance.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>For that, his family has turned to a program with a different app: GoFundMe.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>If your heart is going to stop, right outside a hospital is not a bad place for it.\u003c/p>\n\u003cp>And if 41 people within a 330-yard radius have a \u003ca href=\"http://www.pulsepoint.org/\" target=\"_blank\">cellphone app\u003c/a> alerting them to your distress, so much the better.\u003c/p>\n\u003cp>That's what happened in Seattle last week when Stephen DeMont collapsed at a bus stop in front of University of Washington Medical Center.\u003c/p>\n\u003cp>While a medical student rushed over and began chest compressions, a cardiac nurse just getting off her shift was alerted by her phone, sprinted outside and assisted until paramedics arrived.\u003c/p>\n\u003cp>Five days later, DeMont, 60, is walking, smiling and talking about how the PulsePoint app helped save his life.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Seattle officials say the rescue shows the potential a free download has for connecting CPR-trained citizens with patients who urgently need their help. It's being used in 2,000 U.S. cities in 28 states.\u003c/p>\n\u003cp>\"I put it on my phone yesterday,\" said DeMont's wife, Debi Quirk, a former registered nurse. \"He would not be here as we see him today.\"\u003c/p>\n\u003cp>Seattle officials hope DeMont's story will help persuade thousands more people to sign up for notifications; so far, about 4,000 people in Seattle have downloaded PulsePoint since the city adopted it earlier this year with financial support from an employee charitable fund at Boeing. The goal is to have 15,000 using it.\u003c/p>\n\u003cp>The app, which works through a city's 911 system, was developed by Richard Price, the former chief of the San Ramon Valley Fire Protection District in Northern California. When a call comes in, operators alert people within a certain radius that CPR assistance is needed, along with the location of the nearest portable defibrillator.\u003c/p>\n\u003cp>About 900,000 people around the country have downloaded and carry the app, and 34,000 people have been activated to respond, Price said, adding that alerts have been issued in 13,000 cardiac events.\u003c/p>\n\u003cp>He came up with the idea in 2009. Price told KQED in a 2011 \u003ca href=\"http://ww2.kqed.org/news/wp-content/uploads/sites/10/2011/01/cardiaciphoneapp.mp3\" target=\"_blank\">interview\u003c/a> that he'd been eating lunch in a deli with three colleagues, when \"we heard a siren, and we were wondering where the guys were going. They parked right in front of the deli we were eating at.\"\u003c/p>\n\u003cp>As it turned out, an unconscious patient close by was in need of help.\u003c/p>\n\u003cp>\"Here's the fire chief in uniform, a defibrillator in my car. One of my [lunch companions] is a paramedic, and right next door to us, someone was in great need and we were completely unaware of it.\u003c/p>\n\u003cp>\"We sat the the rest of the afternoon and diagrammed on deli napkins how we could make sure that never happened again.\"\u003c/p>\n\u003cp>In that 2011 interview, Price said survival rates for those in cardiac arrest are very high when CPR is used within the first 2-3 minutes after cardiac arrest.\u003c/p>\n\u003cp>It's not clear how many lives have been saved thanks to the app. Patient confidentiality laws often prevent hospitals from disclosing a patient's outcome.\u003c/p>\n\u003cp>Madeline Dahl, a 23-year-old cardiac nurse at the University of Washington Medical Center, said she downloaded the app about a month ago after reading a news story that mentioned it. Last Friday morning was the first time she'd ever received an alert. She bolted down a couple flights of stairs and ran outside into the rain, where she found 27-year-old medical student Zach Forcade performing chest compressions.\u003c/p>\n\u003cp>Forcade had been on his way into the hospital for a lecture when he saw DeMont, who was just getting off his bicycle, slump over.\u003c/p>\n\u003cp>\"I hadn't responded to a cardiac arrest before,\" Forcade said. \"I thought, 'Did he just fall?' ... Even being in the medical field, I thought, 'Oh, man, who's going to step up?'\"\u003c/p>\n\u003cp>He told another passerby to call 911, which triggered an alert sent out to 41 responders nearby. It was reassuring when Dahl arrived to provide any needed backup, help check for a pulse and otherwise make sure Forcade was responding correctly, he said.\u003c/p>\n\u003cp>For DeMont, it was about more than just being lucky. A contract technical writer at Expedia, he said he has a love-hate relationship with technology — \"You see all these things about people falling off cliffs texting, people are so disconnected\" — but the response from Forcade, Dahl and the use of PulsePoint reaffirmed his belief in its power to make a positive difference.\u003c/p>\n\u003cp>\"There's hope,\" DeMont said.\u003c/p>\n\u003cp>He's due to have a defibrillator implanted on Thursday. Now he just has to figure out how to pay the $100,000 tab without insurance.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>For that, his family has turned to a program with a different app: GoFundMe.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "'Nothing Like It In the Textbooks': When Unproven Stem Cell Treatments Go Awry",
"title": "'Nothing Like It In the Textbooks': When Unproven Stem Cell Treatments Go Awry",
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"content": "\u003cp>https://www.youtube.com/watch?v=8VmqVHBALM4&ab_channel=KPBSNews\u003c/p>\n\u003cp>Jim Gass made sure to record the moment in an iPhone video because he’d paid tens of thousands of dollars and traveled a great distance to get there.\u003c/p>\n\u003cp>In \u003ca href=\"https://www.youtube.com/watch?v=r4k7ibKDkDg\">the video\u003c/a>, Gass can be seen sitting in his wheelchair in a beige hospital room. He smiles while a doctor injects something into his arm. In case there’s any question about what’s going into Gass’s vein, the doctor points to the syringe and says, “Stem cells.”\u003c/p>\n\u003cp>Translating into Spanish a moment later, he says, “Células madre.”\u003c/p>\n\u003cp>Gass traveled to Hospital Angeles in Tijuana, Mexico with the hope of recovering from a debilitating stroke. He received stem cells from Dr. Cesar Amescua based on a referral from \u003ca href=\"http://www.stemedica.com/\">Stemedica Cell Technologies, Inc.\u003c/a>, a San Diego company known for reportedly helping famous former athletes like hockey legend Gordie Howe make “\u003ca href=\"http://www.mlive.com/redwings/index.ssf/2014/12/red_wings_great_gordie_howe_un.html\">miraculous\u003c/a>” recoveries from strokes.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>But Gass didn’t get better.\u003c/p>\n\u003caside class=\"pullquote alignright\">'We need to go back to square one where you do the appropriate research and find out if there’s anything factual to support any of this stuff.'\u003c/aside>\n\u003cp>\"What he didn’t know, smiling in that iPhone video, was that his paralysis would get worse. Nor did he realize that his doctors back home would later find what they call a bizarre tumor in his spine, where Gass says he received injections of fetal stem cells procured by a different company, \u003ca href=\"http://www.globalstemcellhealth.com/\">Global Stem Cell Health, Inc.\u003c/a>\u003c/p>\n\u003cp>Gass had found himself caught up in the world of “\u003ca href=\"http://www.nytimes.com/2016/06/23/health/a-cautionary-tale-of-stem-cell-tourism.html?_r=0\">stem cell tourism\u003c/a>.” The stem cell treatment industry is flourishing in the U.S. without much oversight. Southern California is \u003ca href=\"http://www.sandiegouniontribune.com/business/biotech/sdut-stem-cell-treatments-unauthorized-report-knoepfler-2016jun30-htmlstory.html\">a hotspot\u003c/a> for clinics advertising stem cell treatments for everything from stroke to autism. And experts say San Diego is an attractive location for any company hoping to usher patients across the border for expensive treatments that have not been proven to be safe or effective in humans.\u003c/p>\n\u003cp>The U.S. Food and Drug Administration held \u003ca href=\"http://www.fda.gov/BiologicsBloodVaccines/NewsEvents/WorkshopsMeetingsConferences/ucm462125.htm\">a meeting\u003c/a> on stem cells this month, \u003ca href=\"http://www.kpbs.org/news/2016/sep/05/researchers-question-safety-value-of-untested/\">possibly signaling moves toward increased regulation\u003c/a>. Some scientists think regulators are not doing enough to oversee a growing industry they believe preys on desperate patients. UC San Diego stem cell researcher \u003ca href=\"http://cmm.ucsd.edu/goldstein/\">Larry Goldstein\u003c/a> said his field would welcome regulation to protect consumers from what he called “snake oil treatments.”\u003c/p>\n\u003cp>“Thoughtful FDA regulation of the growing stem cell industry is essential to help consumers distinguish fraudulent claims from legitimate clinical trials, research and therapy development,” Goldstein wrote in an email.\u003c/p>\n\u003cp>https://www.youtube.com/watch?v=U7b8ncmePJI&ab_channel=KPBSNews\u003c/p>\n\u003cp>Stemedica spokesman \u003ca href=\"http://www.stemedica.com/company/management/david_mcguigan.asp\">Dave McGuigan\u003c/a> defends the company’s practices in the U.S. and beyond, saying, “Through our clinical trials in the United States and outside the United States, well over 500 patients have been treated since 2009. And we haven’t had a serious adverse event.”\u003c/p>\n\u003cp>When asked for comment on Jim Gass’ treatment in Tijuana, McGuigan initially said that Gass had never been treated with Stemedica cells. McGuigan also insisted that Stemedica never referred Gass to Dr. Amescua. Shortly after KPBS showed him \u003ca href=\"http://www.kpbs.org/documents/2016/sep/20/jim-gasss-email-correspondence-stemedica/\">emails\u003c/a> and \u003ca href=\"https://www.youtube.com/watch?v=r4k7ibKDkDg\">footage\u003c/a> contradicting his assertion, McGuigan — still on camera and wearing a KPBS microphone — told a fellow Stemedica employee, “Clearly what we’ve been saying as a statement of fact has been incorrect.”\u003c/p>\n\u003cp>The day after the interview, Stemedica officials confirmed that their company did refer Gass to Dr. Amescua, and that Gass was in fact treated intravenously with Stemedica’s adult stem cells. Those were distinct from the fetal stem cells Gass says were injected into his spine.\u003c/p>\n\u003cp>McGuigan said Stemedica works hard to advance stem cell research in a scientifically sound and legally compliant way. But Stemedica has faced criticism over the work it’s associated with outside the U.S.\u003c/p>\n\u003cp>A former member of Stemedica’s scientific advisory board is among those questioning some of the company’s practices. \u003ca href=\"https://www.nyscf.org/news/nyscf-press-releases/item/1636-dr-mahendra-rao-joins-nyscf-as-vp-for-regenerative-medicine\">Mahendra Rao\u003c/a>, currently the vice president for regenerative medicine at the New York Stem Cell Foundation, wrote in an email to KPBS, “Their work with athletes, their interaction with poorly monitored clinics and their business strategy leave me uncomfortable.”\u003c/p>\n\u003cp>\u003cstrong>'He was my hero'\u003c/strong>\u003c/p>\n\u003cp>Gass spent most of his life in Boston, but for the moment he lives in San Diego County. On most weekday mornings he can be found exercising at \u003ca href=\"http://www.projectwalk.com/\">Project Walk\u003c/a> in Carlsbad. Project Walk is sort of like a gym, but for people dealing with varying degrees of paralysis. Here, a personal trainer helps Jim get out of his wheelchair and put his languishing muscles to work.\u003c/p>\n\u003caside class=\"pullquote alignright\">A patient warns: 'Don’t do it. Look at me. You don’t want to spend the rest of your life in a wheelchair. I don’t either.'\u003c/aside>\n\u003cp>“My goal is to transfer from this chair to a bed without using a lift,” Gass said. “And right now I can’t do that.”\u003c/p>\n\u003cp>Gass had a stroke in 2009 at the age of 60. He lost the use of his left arm and leg. Walking was still possible with the help of a cane and a leg brace. But his career as an attorney, his active lifestyle, his love of traveling the world — all of that came to a halt.\u003c/p>\n\u003cp>Gass said his doctors told him there was no cure for his paralysis, and he should focus on physical therapy. He couldn’t accept that there wasn’t anything else he could do.\u003c/p>\n\u003cp>“I got interested in treatment,” he said. “It turned out that stem cells appeared to be what everybody was focused on as the treatment of the future for stroke.”\u003c/p>\n\u003cp>Scientists in the field of regenerative medicine say stem cell treatments are on the horizon for a number of conditions, but they’re still in early stages and it’ll be years before they’re approved.\u003c/p>\n\u003cp>Nevertheless, online searches yield plenty of inspiring stories about stroke patients who’ve gone abroad for stem cell treatments. Gass knew these treatments hadn’t been proven to work, but he decided he was willing to pay expensive fees and travel across the globe on the chance they might help him regain some control of his body.\u003c/p>\n\u003cp>Gass traveled to China and Argentina for a series of stem cell treatments in 2011. He said those treatments didn’t seem to help, but they didn’t seem to hurt. So he decided to give stem cells another shot, based partly on what he’d been hearing about retired NFL star John Brodie.\u003c/p>\n\u003cp>“He used to be the quarterback for the San Francisco 49ers,” Gass said. “When I was growing up, he was my hero.”\u003c/p>\n\u003cp>Brodie, another stroke victim, was said to be making a dramatic recovery thanks to stem cells. In late 2013, Gass emailed the company linked with Brodie’s treatments. That company was Stemedica. In an \u003ca href=\"https://www.youtube.com/watch?v=f7oknI4zimY\">interview with MoneyTV from 2010\u003c/a>, Stemedica chief executive officer Maynard Howe discussed Brodie’s treatment.\u003c/p>\n\u003cfigure id=\"attachment_262605\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/Gass_1_t800.png\">\u003cimg class=\"size-full wp-image-262605\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/Gass_1_t800.png\" alt=\"Jim Gass is pictured at a Project Walk's paralysis recovery center in Carlsbad, July 20, 2016.\" width=\"800\" height=\"478\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/Gass_1_t800.png 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/Gass_1_t800-400x239.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/Gass_1_t800-768x459.png 768w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Jim Gass is pictured at a Project Walk's paralysis recovery center in Carlsbad, July 20, 2016. \u003ccite>(Kris Arciaga)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“John was part of a clinical study that was conducted outside of the United States,” Howe said. “John had a miraculous recovery. He’s back playing golf now. He’s got his speech back. And John travels all over the world by himself.”\u003c/p>\n\u003cp>A few years after Brodie’s treatment, another former athlete and stroke victim was reportedly \u003ca href=\"http://www.huffingtonpost.ca/2014/12/19/gordie-howe-stem-cell-recovery_n_6358012.html\">walking again\u003c/a> following treatment in Tijuana with Stemedica’s cells. This time it was hockey legend Gordie Howe (no relation to Stemedica executives Maynard and Roger Howe). Howe, who died earlier this year, \u003ca href=\"http://www.cbs8.com/story/29079426/inside-the-tijuana-stem-cell-clinic-that-treated-gordie-howe?clienttype=generic&mobilecgbypass\">reportedly\u003c/a> received Stemedica’s cells free of charge in Tijuana \u003ca href=\"https://www.thestar.com/news/canada/2015/04/18/a-closer-look-at-the-startling-recovery-of-gordie-howe.html\">from Dr. Amescua\u003c/a>, the same doctor who would treat Gass.\u003c/p>\n\u003cp>In \u003ca href=\"https://www.youtube.com/watch?v=qn8Vd-SSgNQ\">a San Diego TV news story\u003c/a> about Howe’s recovery, Dr. Amescua is shown saying, “We cannot claim that we will cure the patient with stem cells. OK? But we can definitely say that patients will have an improvement.”\u003c/p>\n\u003cp>Stemedica continues to make news with another former NFL athlete’s story of recovery. In \u003ca href=\"http://www.usatoday.com/story/sports/nfl/packers/2016/09/05/bart-starr-returns-tijuana-stem-cells/89881768/\">a USA Today article\u003c/a> published earlier this month, former Green Bay Packers quarterback Bart Starr discussed his repeated trips to Tijuana for treatments with Stemedica cells.\u003c/p>\n\u003cp>Stem cell scientists don’t discount the possibility that these men saw their condition improve. But they say beyond anecdotal evidence, no proof has been offered that stem cells were responsible for anyone’s “miraculous” recovery.\u003c/p>\n\u003cp>Stemedica has used variations on the word “miracle” in connection with stem cells on a number of occasions. Stemedica executives have even co-written \u003ca href=\"http://www.stemedica.com/info/education/the-miracle-of-stem-cells.asp\">a book\u003c/a> titled “The Miracle of Stem Cells.” The company’s website includes a link to purchase the book for $39.95.\u003c/p>\n\u003cp>Spokesman Dave McGuigan said patients are clearly informed that Stemedica cells come with no promises. “We absolutely do not promise to cure patients,” he said.\u003c/p>\n\u003cp>\u003cstrong>\"We have had NO cases of infection or adverse events\"\u003c/strong>\u003c/p>\n\u003cp>Gass, however, was sold.\u003c/p>\n\u003cp>He emailed Stemedica to ask where he could go for treatment. A company representative referred Gass to Dr. Amescua, a man Stemedica \u003ca href=\"http://www.stemedica.com/info/allogeneic-adult-stem-cells/stem-cell-clinical-trials/062410-Stemedica-Cesar-Amescua-Garcia-Medical-Regulatory-Affairs-Director%E2%80%93Latin-America.asp\">has described in the past\u003c/a> as its “Medical and Regulatory Affairs Director for Latin America” (the company said it has no relationship with Dr. Amescua today).\u003c/p>\n\u003cp>The Stemedica representative wrote to Gass in an email, “Hospital Angeles in Tijuana, Mexico is approved by the Mexican FDA equivalent (COFEPRIS) to conduct a stroke trial with Stemedica's stem cells.”\u003c/p>\n\u003cp>Gass said he followed Stemedica’s referral and got in touch with Dr. Amescua. He said further down the line, he was told that for $30,000, he could receive a round of treatment involving two different types of stem cells.\u003c/p>\n\u003cp>The first type, Gass said he was told, would be mesenchymal stem cells. He said he was informed that they would be manufactured by Stemedica, and would be injected into a vein in his arm. Stemedica said its mesenchymal stem cells are derived from \u003ca href=\"http://www.stemedica.com/technology/productlines.asp\">adult bone marrow\u003c/a>.\u003c/p>\n\u003cp>Gass said he was told that the other type of stem cell would be fetal in origin, and would be injected directly into his cerebrospinal fluid. These fetal neural stem cells, Gass recalled being told, would be procured from Russia not by Stemedica, but by a different company, Global Stem Cell Health (GSCH).\u003c/p>\n\u003cp>Also based in San Diego County, GSCH is run by Dr. Michael Bayer, \u003ca href=\"http://www.stemedica.com/info/013009-stemedica-announces-appointment-of-dr-michael-bayer-as-director-medical-services.asp\">a former Stemedica executive\u003c/a>. Stemedica spokesman Dave McGuigan said there’s now “a clear separation of church and state between what Michael does and what Stemedica does.”\u003c/p>\n\u003cp>A GSCH representative explained the distinction to Gass in an email, writing, “Stemedica cannot treat patients because of FDA regulations, and this is how GSCH was started — to treat ‘no option’ patients seeking alternative therapies.”\u003c/p>\n\u003cp>Gass said he went to Tijuana twice for two separate rounds of treatment in 2014, and his bank statements show that he wired $30,000 to GSCH on two separate occasions that year.\u003c/p>\n\u003cp>Stem cell experts say that mesenchymal cells such as those produced by Stemedica cannot replace destroyed neurons, the very cells killed during a stroke. \u003ca href=\"http://stroke.ahajournals.org/content/early/2016/06/02/STROKEAHA.116.012995.abstract?sid=6d720047-0b70-4b9d-b589-a01ebc09e000\">Limited evidence\u003c/a> has shown possible benefit from injecting modified mesenchymal stem cells directly into the brains of stroke patients, but Gass received Stemedica’s mesenchymal cells intravenously.\u003c/p>\n\u003cp>The use of fetal stem cells in Gass’ case was also highly suspect, according to scientists in the field. They say patients receiving fetal stem cell treatments in other countries can’t always know for sure where these cells come from or how they’ve been prepared for injection. No definitive evidence has been published showing that fetal stem cells can help people recover from a stroke.\u003c/p>\n\u003cp>Stem cell scientists also warn that tumor formation is a distinct possibility when introducing fetal stem cells into humans without proper precautions. A GSCH representative wrote in an email to Gass, “We have had NO cases of infection or adverse events.”\u003c/p>\n\u003cp>Gass said after each of his treatments in Tijuana, he was told to wait three to six months for signs of improvement. He said after the second treatment, something happened.\u003c/p>\n\u003cp>\"I started to feel changes,” Gass said. “But they were not good changes. I started to feel pain in my back.\"\u003c/p>\n\u003cp>\u003cstrong>\"There’s really nothing like it in the textbooks\"\u003c/strong>\u003c/p>\n\u003cp>At this point, Gass said he was also starting to lose even more feeling and movement below his waist. When his doctors in Boston discovered what was causing his back pain and worsening his paralysis, they were shocked.\u003c/p>\n\u003cp>“None of us had ever seen anything like it,” said \u003ca href=\"http://physiciandirectory.brighamandwomens.org/details/12438/aaron-berkowitz-neurology-boston\">Dr. Aaron Berkowitz\u003c/a> of Brigham and Women’s Hospital.\u003c/p>\n\u003cp>Berkowitz and his colleagues found a growth developing in the lower part of Gass’ spine, where Gass said he received injections of GSCH’s fetal stem cells in Tijuana. Genetic analysis revealed that the growth was partly made up of cells from another human being.\u003c/p>\n\u003cp>Berkowitz said even putting a name to this growth was challenging. It was growing like a cancer, but it didn’t have the genetic signatures of cancer.\u003c/p>\n\u003cp>He said, “There’s really nothing like it in the textbooks.” But, he said, “Literally, it’s a tumor, in the sense that it’s an abnormal swelling.”\u003c/p>\n\u003cp>Earlier this year, Berkowtiz co-authored \u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJMc1600188#t=article\">a paper in the \u003cem>New England Journal of Medicine\u003c/em>\u003c/a> about Gass’ situation.\u003c/p>\n\u003cp>“We could point very tangibly to a very important risk that patients should be aware of before pursuing something like this,” Berkowitz said.\u003c/p>\n\u003cp>Gass gave his doctors the go-ahead to fight the tumor with radiation, and that seemed to halt the swelling. But Gass is concerned it may be growing again. He doesn’t rule out the possibility that he could one day sue those connected with his treatments.\u003c/p>\n\u003cp>Gass isn’t the only patient who has experienced complications after receiving stem cell treatments. Medical journals have documented two similar cases. One patient was found to have \u003ca href=\"http://jasn.asnjournals.org/content/21/7/1218.full\">masses in one of her kidneys\u003c/a> following a stem cell treatment. In another case, a brain tumor \u003ca href=\"http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1000029\">was discovered\u003c/a> after a boy suffering from a rare neurodegenerative disease received injections of fetal stem cells. Both journal articles kept the patients anonymous.\u003c/p>\n\u003cp>Gass received stem cell treatments in other countries years before going to Tijuana. Berkowitz said without a sample of the cells used in each case, he can’t be certain which treatment is directly linked with the tumor. But Berkowitz said Gass only reported feeling pain in his back after the second round of treatment in Tijuana, which Gass said included injections of GSCH’s fetal stem cells into his spine.\u003c/p>\n\u003cp>\u003cstrong>'We have no current plans to publish our results'\u003c/strong>\u003c/p>\n\u003cp>\u003ca href=\"http://www.scripps.edu/research/faculty/loring\">Jeanne Loring\u003c/a>, a scientist at the Scripps Research Institute in La Jolla developing \u003ca href=\"https://www.scripps.edu/news/press/2016/20160721loring.html\">a stem cell therapy for Parkinson’s disease\u003c/a>, spoke with KPBS about the stem cell treatment industry broadly, not about any company in particular, because some firms have a reputation for being litigious.\u003c/p>\n\u003cp>“It’s unfortunate that what I work on and what they work on are both called stem cells, because they’re not at all the same,” Loring said. “It’s not a terrific idea to be putting stuff that you don’t know very much about into people and expecting it to work.”\u003c/p>\n\u003cp>Companies promoting stem cell treatments often say they’re only facilitating research. They say they don’t promise to cure patients, only to connect them with clinical trials.\u003c/p>\n\u003cp>Stemedica is sponsoring a number of clinical trials overseen by scientists at reputable institutions within the U.S. These trials \u003ca href=\"https://clinicaltrials.gov/ct2/results?term=stemedica&Search=Search\">are listed on ClinicalTrials.gov\u003c/a>, an online database of human medical studies maintained by the National Institutes of Health.\u003c/p>\n\u003cp>\u003ca href=\"https://clinicaltrials.gov/ct2/show/NCT01297413?term=stemedica&rank=2\">One ongoing Stemedica-sponsored trial\u003c/a> approved by UC San Diego’s Institutional Review Board is primarily aiming to test whether or not it’s safe to give Stemedica’s mesenchymal stem cells intravenously to stroke patients. Stemedica \u003ca href=\"http://www.stemedica.com/info/allogeneic-adult-stem-cells/stem-cell-clinical-trials/2011-0217-Stemedica-Approval-From-UCSD-Ischemic-Stroke-Study.asp\">says it has received the FDA’s approval\u003c/a> to move forward with this trial.\u003c/p>\n\u003cp>The trial started over five years ago, and has not yet reported results. Principal investigator and UCSD School of Medicine professor \u003ca href=\"http://neurosurgery.ucsd.edu/mike-levy-md-phd/\">Michael Levy\u003c/a> said the study is proceeding with appropriate caution.\u003c/p>\n\u003cp>“This is work that needs to be done,” he said. “Because people are paying huge amounts of money to get something that they’re not sure what they’re getting, and to pursue a hope that may not be there. We need to go back to square one where you do the appropriate research and find out if there’s anything factual to support any of this stuff.”\u003c/p>\n\u003cp>Loring said if a stem cell company truly is helping patients make remarkable recoveries, they should prove it by publishing their results.\u003c/p>\n\u003cp>“If they had really good results, they would publish them,” she said. “Because that would be like the best marketing strategy.”\u003c/p>\n\u003cp>Stemedica could not provide published data from any of its human trials.\u003c/p>\n\u003cp>Gass’ sister-in-law, concerned about the treatment Jim was about to receive, asked Global Stem Cell Health if they’d ever published evidence that their treatments work. A representative replied to her via email, “We have no current plans to publish our results.”\u003c/p>\n\u003cp>Ethical concerns have been raised about the fees patients are charged to participate in certain stem cell trials outside the country. Loring said patients are not typically charged large sums of money to participate in clinical trials. She thinks patients should be wary of any trial, or any company, that does charge tens of thousands of dollars for participation in a medical study.\u003c/p>\n\u003cp>When Stemedica spokesman Dave McGuigan was asked about patients who pay large sums of money to receive Stemedica cells as part of a trial outside the U.S., he said Stemedica and their foreign clinical trial partners put up “significant dollars” to carry out these studies, and patients are “asked to participate in those costs.”\u003c/p>\n\u003cp>“We’re talking about people that have a medical condition for which there is often no cure,” McGuigan said. “And so they have searched the world to find out what their options are.”\u003c/p>\n\u003cp>Dr. Amescua has confirmed that after KPBS approached him for comment on Gass’ treatment, he was able to find hospital records pertaining to Gass. Global Stem Cell Health did not respond to KPBS’ interview request.\u003c/p>\n\u003cp>\u003cstrong>A call for regulation\u003c/strong>\u003c/p>\n\u003cp>Gass went through a process often referred to as “stem cell tourism” to receive his treatments. In years past, patients often had to leave the country to seek unproven stem cell treatments. But UC Davis stem cell scientist \u003ca href=\"http://www.ucdmc.ucdavis.edu/cellbio/faculty/knoepfler/\">Paul Knoepfler\u003c/a> says that’s no longer the case.\u003c/p>\n\u003cp>Knoepfler recently co-authored \u003ca href=\"http://www.sciencedirect.com/science/article/pii/S1934590916301576\">a study\u003c/a> identifying 351 stem cell companies advertising unapproved treatments at 570 unique clinic locations right here in the U.S. for everything from autism to Alzheimer’s, stroke to diabetes.\u003c/p>\n\u003cp>“This kind of turns the idea of stem cell tourism on its head,” Knoepfler said. Now, he said, “Most Americans really don’t have to travel, say, to Mexico or Asia or somewhere in the Caribbean to get an unapproved stem cell treatment.”\u003c/p>\n\u003cp>Some scientists wonder why the FDA hasn’t taken more action against companies promoting unproven stem cell treatments. Scripps Research Institute scientist Jeanne Loring believes regulators may simply be outmatched.\u003c/p>\n\u003cp>“The clinics are popping up faster than the FDA can close them,” she said.\u003c/p>\n\u003cp>An FDA spokeswoman did not comment on Jim Gass’ situation or the specific companies involved with his treatment. The FDA has \u003ca href=\"http://www.fda.gov/AboutFDA/Transparency/Basics/ucm194655.htm\">approved the use of blood forming stem cells\u003c/a> in patients with certain blood disorders, but the FDA spokeswoman wrote in an email to KPBS, “At this time, the value of stem cells as a treatment for most conditions is largely unproven and more information is needed about their potential benefits.”\u003c/p>\n\u003cp>Loring attended the FDA’s meeting on stem cells earlier this month and spoke about why she thinks better regulation is needed. She believes there could be more patients out there who aren’t coming forward to discuss the harms they’ve suffered in connection with unproven stem cell treatments.\u003c/p>\n\u003cp>Patients sometimes raise money for these treatments through web sites like GoFundMe.com. Some say they’re willing to take a chance on unproven stem cell therapies because they have nothing to lose.\u003c/p>\n\u003cp>Gass now knows he did have a lot to lose. He said all told, he lost hundreds of thousands of dollars pursuing stem cell treatments around the world, and now he’s left with a painful tumor and significantly decreased mobility.\u003c/p>\n\u003cp>Gass hopes other patients considering reaching out to companies promoting unproven stem cell treatments will be more educated about the risks than he was.\u003c/p>\n\u003cp>He said, “Don’t do it. Look at me. You don’t want to spend the rest of your life in a wheelchair. I don’t either.\"\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>inewsource reporter Leo Castaneda contributed to this report.\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/8VmqVHBALM4'\n title='//www.youtube.com/embed/8VmqVHBALM4'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>Jim Gass made sure to record the moment in an iPhone video because he’d paid tens of thousands of dollars and traveled a great distance to get there.\u003c/p>\n\u003cp>In \u003ca href=\"https://www.youtube.com/watch?v=r4k7ibKDkDg\">the video\u003c/a>, Gass can be seen sitting in his wheelchair in a beige hospital room. He smiles while a doctor injects something into his arm. In case there’s any question about what’s going into Gass’s vein, the doctor points to the syringe and says, “Stem cells.”\u003c/p>\n\u003cp>Translating into Spanish a moment later, he says, “Células madre.”\u003c/p>\n\u003cp>Gass traveled to Hospital Angeles in Tijuana, Mexico with the hope of recovering from a debilitating stroke. He received stem cells from Dr. Cesar Amescua based on a referral from \u003ca href=\"http://www.stemedica.com/\">Stemedica Cell Technologies, Inc.\u003c/a>, a San Diego company known for reportedly helping famous former athletes like hockey legend Gordie Howe make “\u003ca href=\"http://www.mlive.com/redwings/index.ssf/2014/12/red_wings_great_gordie_howe_un.html\">miraculous\u003c/a>” recoveries from strokes.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>But Gass didn’t get better.\u003c/p>\n\u003caside class=\"pullquote alignright\">'We need to go back to square one where you do the appropriate research and find out if there’s anything factual to support any of this stuff.'\u003c/aside>\n\u003cp>\"What he didn’t know, smiling in that iPhone video, was that his paralysis would get worse. Nor did he realize that his doctors back home would later find what they call a bizarre tumor in his spine, where Gass says he received injections of fetal stem cells procured by a different company, \u003ca href=\"http://www.globalstemcellhealth.com/\">Global Stem Cell Health, Inc.\u003c/a>\u003c/p>\n\u003cp>Gass had found himself caught up in the world of “\u003ca href=\"http://www.nytimes.com/2016/06/23/health/a-cautionary-tale-of-stem-cell-tourism.html?_r=0\">stem cell tourism\u003c/a>.” The stem cell treatment industry is flourishing in the U.S. without much oversight. Southern California is \u003ca href=\"http://www.sandiegouniontribune.com/business/biotech/sdut-stem-cell-treatments-unauthorized-report-knoepfler-2016jun30-htmlstory.html\">a hotspot\u003c/a> for clinics advertising stem cell treatments for everything from stroke to autism. And experts say San Diego is an attractive location for any company hoping to usher patients across the border for expensive treatments that have not been proven to be safe or effective in humans.\u003c/p>\n\u003cp>The U.S. Food and Drug Administration held \u003ca href=\"http://www.fda.gov/BiologicsBloodVaccines/NewsEvents/WorkshopsMeetingsConferences/ucm462125.htm\">a meeting\u003c/a> on stem cells this month, \u003ca href=\"http://www.kpbs.org/news/2016/sep/05/researchers-question-safety-value-of-untested/\">possibly signaling moves toward increased regulation\u003c/a>. Some scientists think regulators are not doing enough to oversee a growing industry they believe preys on desperate patients. UC San Diego stem cell researcher \u003ca href=\"http://cmm.ucsd.edu/goldstein/\">Larry Goldstein\u003c/a> said his field would welcome regulation to protect consumers from what he called “snake oil treatments.”\u003c/p>\n\u003cp>“Thoughtful FDA regulation of the growing stem cell industry is essential to help consumers distinguish fraudulent claims from legitimate clinical trials, research and therapy development,” Goldstein wrote in an email.\u003c/p>\u003c/p>\u003cp>\u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutube'>\n \u003cspan class='utils-parseShortcode-shortcodes-__youtubeShortcode__embedYoutubeInside'>\n \u003ciframe\n loading='lazy'\n class='utils-parseShortcode-shortcodes-__youtubeShortcode__youtubePlayer'\n type='text/html'\n src='//www.youtube.com/embed/U7b8ncmePJI'\n title='//www.youtube.com/embed/U7b8ncmePJI'\n allowfullscreen='true'\n style='border:0;'>\u003c/iframe>\n \u003c/span>\n \u003c/span>\u003c/p>\u003cp>\u003cp>Stemedica spokesman \u003ca href=\"http://www.stemedica.com/company/management/david_mcguigan.asp\">Dave McGuigan\u003c/a> defends the company’s practices in the U.S. and beyond, saying, “Through our clinical trials in the United States and outside the United States, well over 500 patients have been treated since 2009. And we haven’t had a serious adverse event.”\u003c/p>\n\u003cp>When asked for comment on Jim Gass’ treatment in Tijuana, McGuigan initially said that Gass had never been treated with Stemedica cells. McGuigan also insisted that Stemedica never referred Gass to Dr. Amescua. Shortly after KPBS showed him \u003ca href=\"http://www.kpbs.org/documents/2016/sep/20/jim-gasss-email-correspondence-stemedica/\">emails\u003c/a> and \u003ca href=\"https://www.youtube.com/watch?v=r4k7ibKDkDg\">footage\u003c/a> contradicting his assertion, McGuigan — still on camera and wearing a KPBS microphone — told a fellow Stemedica employee, “Clearly what we’ve been saying as a statement of fact has been incorrect.”\u003c/p>\n\u003cp>The day after the interview, Stemedica officials confirmed that their company did refer Gass to Dr. Amescua, and that Gass was in fact treated intravenously with Stemedica’s adult stem cells. Those were distinct from the fetal stem cells Gass says were injected into his spine.\u003c/p>\n\u003cp>McGuigan said Stemedica works hard to advance stem cell research in a scientifically sound and legally compliant way. But Stemedica has faced criticism over the work it’s associated with outside the U.S.\u003c/p>\n\u003cp>A former member of Stemedica’s scientific advisory board is among those questioning some of the company’s practices. \u003ca href=\"https://www.nyscf.org/news/nyscf-press-releases/item/1636-dr-mahendra-rao-joins-nyscf-as-vp-for-regenerative-medicine\">Mahendra Rao\u003c/a>, currently the vice president for regenerative medicine at the New York Stem Cell Foundation, wrote in an email to KPBS, “Their work with athletes, their interaction with poorly monitored clinics and their business strategy leave me uncomfortable.”\u003c/p>\n\u003cp>\u003cstrong>'He was my hero'\u003c/strong>\u003c/p>\n\u003cp>Gass spent most of his life in Boston, but for the moment he lives in San Diego County. On most weekday mornings he can be found exercising at \u003ca href=\"http://www.projectwalk.com/\">Project Walk\u003c/a> in Carlsbad. Project Walk is sort of like a gym, but for people dealing with varying degrees of paralysis. Here, a personal trainer helps Jim get out of his wheelchair and put his languishing muscles to work.\u003c/p>\n\u003caside class=\"pullquote alignright\">A patient warns: 'Don’t do it. Look at me. You don’t want to spend the rest of your life in a wheelchair. I don’t either.'\u003c/aside>\n\u003cp>“My goal is to transfer from this chair to a bed without using a lift,” Gass said. “And right now I can’t do that.”\u003c/p>\n\u003cp>Gass had a stroke in 2009 at the age of 60. He lost the use of his left arm and leg. Walking was still possible with the help of a cane and a leg brace. But his career as an attorney, his active lifestyle, his love of traveling the world — all of that came to a halt.\u003c/p>\n\u003cp>Gass said his doctors told him there was no cure for his paralysis, and he should focus on physical therapy. He couldn’t accept that there wasn’t anything else he could do.\u003c/p>\n\u003cp>“I got interested in treatment,” he said. “It turned out that stem cells appeared to be what everybody was focused on as the treatment of the future for stroke.”\u003c/p>\n\u003cp>Scientists in the field of regenerative medicine say stem cell treatments are on the horizon for a number of conditions, but they’re still in early stages and it’ll be years before they’re approved.\u003c/p>\n\u003cp>Nevertheless, online searches yield plenty of inspiring stories about stroke patients who’ve gone abroad for stem cell treatments. Gass knew these treatments hadn’t been proven to work, but he decided he was willing to pay expensive fees and travel across the globe on the chance they might help him regain some control of his body.\u003c/p>\n\u003cp>Gass traveled to China and Argentina for a series of stem cell treatments in 2011. He said those treatments didn’t seem to help, but they didn’t seem to hurt. So he decided to give stem cells another shot, based partly on what he’d been hearing about retired NFL star John Brodie.\u003c/p>\n\u003cp>“He used to be the quarterback for the San Francisco 49ers,” Gass said. “When I was growing up, he was my hero.”\u003c/p>\n\u003cp>Brodie, another stroke victim, was said to be making a dramatic recovery thanks to stem cells. In late 2013, Gass emailed the company linked with Brodie’s treatments. That company was Stemedica. In an \u003ca href=\"https://www.youtube.com/watch?v=f7oknI4zimY\">interview with MoneyTV from 2010\u003c/a>, Stemedica chief executive officer Maynard Howe discussed Brodie’s treatment.\u003c/p>\n\u003cfigure id=\"attachment_262605\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/Gass_1_t800.png\">\u003cimg class=\"size-full wp-image-262605\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/Gass_1_t800.png\" alt=\"Jim Gass is pictured at a Project Walk's paralysis recovery center in Carlsbad, July 20, 2016.\" width=\"800\" height=\"478\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/Gass_1_t800.png 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/Gass_1_t800-400x239.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/Gass_1_t800-768x459.png 768w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Jim Gass is pictured at a Project Walk's paralysis recovery center in Carlsbad, July 20, 2016. \u003ccite>(Kris Arciaga)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“John was part of a clinical study that was conducted outside of the United States,” Howe said. “John had a miraculous recovery. He’s back playing golf now. He’s got his speech back. And John travels all over the world by himself.”\u003c/p>\n\u003cp>A few years after Brodie’s treatment, another former athlete and stroke victim was reportedly \u003ca href=\"http://www.huffingtonpost.ca/2014/12/19/gordie-howe-stem-cell-recovery_n_6358012.html\">walking again\u003c/a> following treatment in Tijuana with Stemedica’s cells. This time it was hockey legend Gordie Howe (no relation to Stemedica executives Maynard and Roger Howe). Howe, who died earlier this year, \u003ca href=\"http://www.cbs8.com/story/29079426/inside-the-tijuana-stem-cell-clinic-that-treated-gordie-howe?clienttype=generic&mobilecgbypass\">reportedly\u003c/a> received Stemedica’s cells free of charge in Tijuana \u003ca href=\"https://www.thestar.com/news/canada/2015/04/18/a-closer-look-at-the-startling-recovery-of-gordie-howe.html\">from Dr. Amescua\u003c/a>, the same doctor who would treat Gass.\u003c/p>\n\u003cp>In \u003ca href=\"https://www.youtube.com/watch?v=qn8Vd-SSgNQ\">a San Diego TV news story\u003c/a> about Howe’s recovery, Dr. Amescua is shown saying, “We cannot claim that we will cure the patient with stem cells. OK? But we can definitely say that patients will have an improvement.”\u003c/p>\n\u003cp>Stemedica continues to make news with another former NFL athlete’s story of recovery. In \u003ca href=\"http://www.usatoday.com/story/sports/nfl/packers/2016/09/05/bart-starr-returns-tijuana-stem-cells/89881768/\">a USA Today article\u003c/a> published earlier this month, former Green Bay Packers quarterback Bart Starr discussed his repeated trips to Tijuana for treatments with Stemedica cells.\u003c/p>\n\u003cp>Stem cell scientists don’t discount the possibility that these men saw their condition improve. But they say beyond anecdotal evidence, no proof has been offered that stem cells were responsible for anyone’s “miraculous” recovery.\u003c/p>\n\u003cp>Stemedica has used variations on the word “miracle” in connection with stem cells on a number of occasions. Stemedica executives have even co-written \u003ca href=\"http://www.stemedica.com/info/education/the-miracle-of-stem-cells.asp\">a book\u003c/a> titled “The Miracle of Stem Cells.” The company’s website includes a link to purchase the book for $39.95.\u003c/p>\n\u003cp>Spokesman Dave McGuigan said patients are clearly informed that Stemedica cells come with no promises. “We absolutely do not promise to cure patients,” he said.\u003c/p>\n\u003cp>\u003cstrong>\"We have had NO cases of infection or adverse events\"\u003c/strong>\u003c/p>\n\u003cp>Gass, however, was sold.\u003c/p>\n\u003cp>He emailed Stemedica to ask where he could go for treatment. A company representative referred Gass to Dr. Amescua, a man Stemedica \u003ca href=\"http://www.stemedica.com/info/allogeneic-adult-stem-cells/stem-cell-clinical-trials/062410-Stemedica-Cesar-Amescua-Garcia-Medical-Regulatory-Affairs-Director%E2%80%93Latin-America.asp\">has described in the past\u003c/a> as its “Medical and Regulatory Affairs Director for Latin America” (the company said it has no relationship with Dr. Amescua today).\u003c/p>\n\u003cp>The Stemedica representative wrote to Gass in an email, “Hospital Angeles in Tijuana, Mexico is approved by the Mexican FDA equivalent (COFEPRIS) to conduct a stroke trial with Stemedica's stem cells.”\u003c/p>\n\u003cp>Gass said he followed Stemedica’s referral and got in touch with Dr. Amescua. He said further down the line, he was told that for $30,000, he could receive a round of treatment involving two different types of stem cells.\u003c/p>\n\u003cp>The first type, Gass said he was told, would be mesenchymal stem cells. He said he was informed that they would be manufactured by Stemedica, and would be injected into a vein in his arm. Stemedica said its mesenchymal stem cells are derived from \u003ca href=\"http://www.stemedica.com/technology/productlines.asp\">adult bone marrow\u003c/a>.\u003c/p>\n\u003cp>Gass said he was told that the other type of stem cell would be fetal in origin, and would be injected directly into his cerebrospinal fluid. These fetal neural stem cells, Gass recalled being told, would be procured from Russia not by Stemedica, but by a different company, Global Stem Cell Health (GSCH).\u003c/p>\n\u003cp>Also based in San Diego County, GSCH is run by Dr. Michael Bayer, \u003ca href=\"http://www.stemedica.com/info/013009-stemedica-announces-appointment-of-dr-michael-bayer-as-director-medical-services.asp\">a former Stemedica executive\u003c/a>. Stemedica spokesman Dave McGuigan said there’s now “a clear separation of church and state between what Michael does and what Stemedica does.”\u003c/p>\n\u003cp>A GSCH representative explained the distinction to Gass in an email, writing, “Stemedica cannot treat patients because of FDA regulations, and this is how GSCH was started — to treat ‘no option’ patients seeking alternative therapies.”\u003c/p>\n\u003cp>Gass said he went to Tijuana twice for two separate rounds of treatment in 2014, and his bank statements show that he wired $30,000 to GSCH on two separate occasions that year.\u003c/p>\n\u003cp>Stem cell experts say that mesenchymal cells such as those produced by Stemedica cannot replace destroyed neurons, the very cells killed during a stroke. \u003ca href=\"http://stroke.ahajournals.org/content/early/2016/06/02/STROKEAHA.116.012995.abstract?sid=6d720047-0b70-4b9d-b589-a01ebc09e000\">Limited evidence\u003c/a> has shown possible benefit from injecting modified mesenchymal stem cells directly into the brains of stroke patients, but Gass received Stemedica’s mesenchymal cells intravenously.\u003c/p>\n\u003cp>The use of fetal stem cells in Gass’ case was also highly suspect, according to scientists in the field. They say patients receiving fetal stem cell treatments in other countries can’t always know for sure where these cells come from or how they’ve been prepared for injection. No definitive evidence has been published showing that fetal stem cells can help people recover from a stroke.\u003c/p>\n\u003cp>Stem cell scientists also warn that tumor formation is a distinct possibility when introducing fetal stem cells into humans without proper precautions. A GSCH representative wrote in an email to Gass, “We have had NO cases of infection or adverse events.”\u003c/p>\n\u003cp>Gass said after each of his treatments in Tijuana, he was told to wait three to six months for signs of improvement. He said after the second treatment, something happened.\u003c/p>\n\u003cp>\"I started to feel changes,” Gass said. “But they were not good changes. I started to feel pain in my back.\"\u003c/p>\n\u003cp>\u003cstrong>\"There’s really nothing like it in the textbooks\"\u003c/strong>\u003c/p>\n\u003cp>At this point, Gass said he was also starting to lose even more feeling and movement below his waist. When his doctors in Boston discovered what was causing his back pain and worsening his paralysis, they were shocked.\u003c/p>\n\u003cp>“None of us had ever seen anything like it,” said \u003ca href=\"http://physiciandirectory.brighamandwomens.org/details/12438/aaron-berkowitz-neurology-boston\">Dr. Aaron Berkowitz\u003c/a> of Brigham and Women’s Hospital.\u003c/p>\n\u003cp>Berkowitz and his colleagues found a growth developing in the lower part of Gass’ spine, where Gass said he received injections of GSCH’s fetal stem cells in Tijuana. Genetic analysis revealed that the growth was partly made up of cells from another human being.\u003c/p>\n\u003cp>Berkowitz said even putting a name to this growth was challenging. It was growing like a cancer, but it didn’t have the genetic signatures of cancer.\u003c/p>\n\u003cp>He said, “There’s really nothing like it in the textbooks.” But, he said, “Literally, it’s a tumor, in the sense that it’s an abnormal swelling.”\u003c/p>\n\u003cp>Earlier this year, Berkowtiz co-authored \u003ca href=\"http://www.nejm.org/doi/full/10.1056/NEJMc1600188#t=article\">a paper in the \u003cem>New England Journal of Medicine\u003c/em>\u003c/a> about Gass’ situation.\u003c/p>\n\u003cp>“We could point very tangibly to a very important risk that patients should be aware of before pursuing something like this,” Berkowitz said.\u003c/p>\n\u003cp>Gass gave his doctors the go-ahead to fight the tumor with radiation, and that seemed to halt the swelling. But Gass is concerned it may be growing again. He doesn’t rule out the possibility that he could one day sue those connected with his treatments.\u003c/p>\n\u003cp>Gass isn’t the only patient who has experienced complications after receiving stem cell treatments. Medical journals have documented two similar cases. One patient was found to have \u003ca href=\"http://jasn.asnjournals.org/content/21/7/1218.full\">masses in one of her kidneys\u003c/a> following a stem cell treatment. In another case, a brain tumor \u003ca href=\"http://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1000029\">was discovered\u003c/a> after a boy suffering from a rare neurodegenerative disease received injections of fetal stem cells. Both journal articles kept the patients anonymous.\u003c/p>\n\u003cp>Gass received stem cell treatments in other countries years before going to Tijuana. Berkowitz said without a sample of the cells used in each case, he can’t be certain which treatment is directly linked with the tumor. But Berkowitz said Gass only reported feeling pain in his back after the second round of treatment in Tijuana, which Gass said included injections of GSCH’s fetal stem cells into his spine.\u003c/p>\n\u003cp>\u003cstrong>'We have no current plans to publish our results'\u003c/strong>\u003c/p>\n\u003cp>\u003ca href=\"http://www.scripps.edu/research/faculty/loring\">Jeanne Loring\u003c/a>, a scientist at the Scripps Research Institute in La Jolla developing \u003ca href=\"https://www.scripps.edu/news/press/2016/20160721loring.html\">a stem cell therapy for Parkinson’s disease\u003c/a>, spoke with KPBS about the stem cell treatment industry broadly, not about any company in particular, because some firms have a reputation for being litigious.\u003c/p>\n\u003cp>“It’s unfortunate that what I work on and what they work on are both called stem cells, because they’re not at all the same,” Loring said. “It’s not a terrific idea to be putting stuff that you don’t know very much about into people and expecting it to work.”\u003c/p>\n\u003cp>Companies promoting stem cell treatments often say they’re only facilitating research. They say they don’t promise to cure patients, only to connect them with clinical trials.\u003c/p>\n\u003cp>Stemedica is sponsoring a number of clinical trials overseen by scientists at reputable institutions within the U.S. These trials \u003ca href=\"https://clinicaltrials.gov/ct2/results?term=stemedica&Search=Search\">are listed on ClinicalTrials.gov\u003c/a>, an online database of human medical studies maintained by the National Institutes of Health.\u003c/p>\n\u003cp>\u003ca href=\"https://clinicaltrials.gov/ct2/show/NCT01297413?term=stemedica&rank=2\">One ongoing Stemedica-sponsored trial\u003c/a> approved by UC San Diego’s Institutional Review Board is primarily aiming to test whether or not it’s safe to give Stemedica’s mesenchymal stem cells intravenously to stroke patients. Stemedica \u003ca href=\"http://www.stemedica.com/info/allogeneic-adult-stem-cells/stem-cell-clinical-trials/2011-0217-Stemedica-Approval-From-UCSD-Ischemic-Stroke-Study.asp\">says it has received the FDA’s approval\u003c/a> to move forward with this trial.\u003c/p>\n\u003cp>The trial started over five years ago, and has not yet reported results. Principal investigator and UCSD School of Medicine professor \u003ca href=\"http://neurosurgery.ucsd.edu/mike-levy-md-phd/\">Michael Levy\u003c/a> said the study is proceeding with appropriate caution.\u003c/p>\n\u003cp>“This is work that needs to be done,” he said. “Because people are paying huge amounts of money to get something that they’re not sure what they’re getting, and to pursue a hope that may not be there. We need to go back to square one where you do the appropriate research and find out if there’s anything factual to support any of this stuff.”\u003c/p>\n\u003cp>Loring said if a stem cell company truly is helping patients make remarkable recoveries, they should prove it by publishing their results.\u003c/p>\n\u003cp>“If they had really good results, they would publish them,” she said. “Because that would be like the best marketing strategy.”\u003c/p>\n\u003cp>Stemedica could not provide published data from any of its human trials.\u003c/p>\n\u003cp>Gass’ sister-in-law, concerned about the treatment Jim was about to receive, asked Global Stem Cell Health if they’d ever published evidence that their treatments work. A representative replied to her via email, “We have no current plans to publish our results.”\u003c/p>\n\u003cp>Ethical concerns have been raised about the fees patients are charged to participate in certain stem cell trials outside the country. Loring said patients are not typically charged large sums of money to participate in clinical trials. She thinks patients should be wary of any trial, or any company, that does charge tens of thousands of dollars for participation in a medical study.\u003c/p>\n\u003cp>When Stemedica spokesman Dave McGuigan was asked about patients who pay large sums of money to receive Stemedica cells as part of a trial outside the U.S., he said Stemedica and their foreign clinical trial partners put up “significant dollars” to carry out these studies, and patients are “asked to participate in those costs.”\u003c/p>\n\u003cp>“We’re talking about people that have a medical condition for which there is often no cure,” McGuigan said. “And so they have searched the world to find out what their options are.”\u003c/p>\n\u003cp>Dr. Amescua has confirmed that after KPBS approached him for comment on Gass’ treatment, he was able to find hospital records pertaining to Gass. Global Stem Cell Health did not respond to KPBS’ interview request.\u003c/p>\n\u003cp>\u003cstrong>A call for regulation\u003c/strong>\u003c/p>\n\u003cp>Gass went through a process often referred to as “stem cell tourism” to receive his treatments. In years past, patients often had to leave the country to seek unproven stem cell treatments. But UC Davis stem cell scientist \u003ca href=\"http://www.ucdmc.ucdavis.edu/cellbio/faculty/knoepfler/\">Paul Knoepfler\u003c/a> says that’s no longer the case.\u003c/p>\n\u003cp>Knoepfler recently co-authored \u003ca href=\"http://www.sciencedirect.com/science/article/pii/S1934590916301576\">a study\u003c/a> identifying 351 stem cell companies advertising unapproved treatments at 570 unique clinic locations right here in the U.S. for everything from autism to Alzheimer’s, stroke to diabetes.\u003c/p>\n\u003cp>“This kind of turns the idea of stem cell tourism on its head,” Knoepfler said. Now, he said, “Most Americans really don’t have to travel, say, to Mexico or Asia or somewhere in the Caribbean to get an unapproved stem cell treatment.”\u003c/p>\n\u003cp>Some scientists wonder why the FDA hasn’t taken more action against companies promoting unproven stem cell treatments. Scripps Research Institute scientist Jeanne Loring believes regulators may simply be outmatched.\u003c/p>\n\u003cp>“The clinics are popping up faster than the FDA can close them,” she said.\u003c/p>\n\u003cp>An FDA spokeswoman did not comment on Jim Gass’ situation or the specific companies involved with his treatment. The FDA has \u003ca href=\"http://www.fda.gov/AboutFDA/Transparency/Basics/ucm194655.htm\">approved the use of blood forming stem cells\u003c/a> in patients with certain blood disorders, but the FDA spokeswoman wrote in an email to KPBS, “At this time, the value of stem cells as a treatment for most conditions is largely unproven and more information is needed about their potential benefits.”\u003c/p>\n\u003cp>Loring attended the FDA’s meeting on stem cells earlier this month and spoke about why she thinks better regulation is needed. She believes there could be more patients out there who aren’t coming forward to discuss the harms they’ve suffered in connection with unproven stem cell treatments.\u003c/p>\n\u003cp>Patients sometimes raise money for these treatments through web sites like GoFundMe.com. Some say they’re willing to take a chance on unproven stem cell therapies because they have nothing to lose.\u003c/p>\n\u003cp>Gass now knows he did have a lot to lose. He said all told, he lost hundreds of thousands of dollars pursuing stem cell treatments around the world, and now he’s left with a painful tumor and significantly decreased mobility.\u003c/p>\n\u003cp>Gass hopes other patients considering reaching out to companies promoting unproven stem cell treatments will be more educated about the risks than he was.\u003c/p>\n\u003cp>He said, “Don’t do it. Look at me. You don’t want to spend the rest of your life in a wheelchair. I don’t either.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>inewsource reporter Leo Castaneda contributed to this report.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "The Rise and Fall of Theranos: A Cartoon History",
"title": "The Rise and Fall of Theranos: A Cartoon History",
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"excerpt": "Once the golden child of Silicon Valley innovation, now the poster child for Silicon Valley hype--in our cartoon history, a couple of new events to reflect the continued unraveling of Theranos ...",
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"description": "Once the golden child of Silicon Valley innovation, now the poster child for Silicon Valley hype--in our cartoon history, a couple of new events to reflect the continued unraveling of Theranos ...",
"title": "The Rise and Fall of Theranos: A Cartoon History | KQED",
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400w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/KQED_Theranos_08r2-458x600.jpg 458w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/KQED_Theranos_08r2-768x1007.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/KQED_Theranos_08r2-900x1180.jpg 900w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/KQED_Theranos_08r2-1180x1547.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/KQED_Theranos_08r2-960x1259.jpg 960w\" sizes=\"(max-width: 1920px) 100vw, 1920px\">\u003c/a>\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/KQED_Theranos_09r.jpg\">\u003cimg class=\"aligncenter size-full wp-image-262504\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/10/KQED_Theranos_09r.jpg\" alt=\"KQED_Theranos_09r\" width=\"1920\" height=\"3142\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/10/KQED_Theranos_09r.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/10/KQED_Theranos_09r-400x655.jpg 400w, 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"content": "\u003cp>A couple of weeks ago, it was a \u003ca href=\"http://jama.jamanetwork.com/article.aspx?articleid=2553448\" target=\"_blank\">study\u003c/a> published in JAMA, the Journal of the American Medical Association, that found an activity tracker \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/09/20/weight-loss-study-finds-fitness-tracker-is-no-help/\" target=\"_blank\">failed to help users lose weight\u003c/a>.\u003c/p>\n\u003cp>Next came headlines like \"\u003ca class=\"_sQb\" href=\"http://www.cosmopolitan.com/health-fitness/a3617025/fitness-trackers-dont-help-you-lose-weight-after-all/\" target=\"_blank\">Fitness Trackers Don't Help You Lose Weight, After All\u003c/a>\" (in Cosmo, no less).\u003c/p>\n\u003caside class=\"pullquote alignright\">Study finds no improvement in health of Fitbit Zip users. But are the results translatable to real life?\u003c/aside>\n\u003cp>Now The Lancet Diabetes & Endocrinology has published a \u003ca href=\"http://www.thelancet.com/journals/landia/article/PIIS2213-8587(16)30284-4/fulltext\" target=\"_blank\">study\u003c/a> that found individuals who got cash or charity donation incentives to wear a Fitbit Zip activity tracker showed, after one year, no improvement in weight, blood pressure and other fitness measures\u003ca href=\"https://www.google.com/search?q=maximum+oxygen+consumption\" target=\"_blank\">.\u003c/a>\u003c/p>\n\u003cp>The study recruited 800 employees, aged 21-65, from 13 different companies in Singapore. It was designed to measure the Fitbits' impacts on health outcomes and how financial incentives affected peoples' use of the device.\u003c/p>\n\u003cp>Participants were randomly placed in four different groups, two of which were given the Fitbits plus weekly financial incentives, with a high of $30 awarded for logging 70,000 or more steps. Participants in one of the cash-incentive groups could keep the money; people in the other had to donate it to a charity of their choice. A third group got the Fitbit Zip and access to Fitbit's website but no incentives; and the fourth, a control group, was given no trackers, just some information about exercise.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The people who got to pocket the cash or donate it to charity logged more daily steps each week than the people in the non-incentivized groups. The cash group also saw a significantly smaller attrition rate -- after six months, just 12 percent of that group had stopped wearing the devices.\u003c/p>\n\u003cp>\u003cstrong>No Cash, No Fitbit\u003c/strong>\u003c/p>\n\u003cp>But the incentives stopped at the six-month mark. Over the six months after that, by the end of a full year from the study's start, 90 percent of participants in all groups had stopped wearing the devices.\u003c/p>\n\u003cp>And ... no one had a significant improvement in any health measure.\u003c/p>\n\u003cp>The researchers attributed the lack of improved health to the reality that an increase in steps does not necessarily translate to much of a boost in moderate-intensity and vigorous-intensity physical activity.\u003c/p>\n\u003cp>So what is the conclusion here?\u003c/p>\n\u003cp>\"Although other incentive strategies might generate greater increases in step activity and improvements in health outcomes,\" the researchers wrote, \"incentives would probably need to be in place long term to avoid any potential decrease in physical activity resulting from discontinuation.\"\u003c/p>\n\u003cp>The lack of any observable health benefits from use of the trackers, they wrote, called into question \"the value of these devices for health promotion.\"\u003c/p>\n\u003cp>\u003cstrong>Not So Fast ...\u003c/strong>\u003c/p>\n\u003cp>A different \u003ca href=\"http://preview.thenewsmarket.com/Previews/JOUR/DocumentAssets/448807.pdf\" target=\"_blank\">study\u003c/a> we mentioned earlier, published in \u003cem>JAMA \u003c/em>last month, found that those who were put on a weight-loss plan encompassing diet, exercise and counseling actually \u003cem>lost more weight\u003c/em> than those who were given the same plus a fitness tracker. That didn't look too good for Team Digital Health.\u003c/p>\n\u003cp>But not everyone thought the study was relevant. Aaron Coleman, founder and CEO of Fitabase, a company that makes data tools \"which make Fitbits awesome in research,\" published a \u003ca href=\"https://medium.com/@aaroncoleman/its-not-time-to-throw-away-your-fitbit-but-it-is-time-to-rethink-how-to-do-research-94dc498eb63f#.iy10v11qg\">piece\u003c/a> on Medium criticizing news reports that failed to note that the device the users gave participants is now obsolete.\u003c/p>\n\u003cblockquote>\u003cp>The problem? The device used in the intervention bears no resemblance to a “wearable” as we’d call it today. It was ... a discontinued, very clunky, very clinical looking arm strap and sensor brick called the Bodymedia FIT Core.\u003c/p>\n\u003cp id=\"7802\" class=\"graf graf--p graf-after--figure\">Even the amount of data collected in the study suggests that the term “wearable” may be a bit of a stretch, as on the days that participants wore the device, the median wear time was 4 hours (241.1 min/d to be exact).\u003c/p>\n\u003cp>To equate the user experience of today’s modern wearables, as many have done with this, got me a little sarcastic…\u003c/p>\u003c/blockquote>\n\u003cblockquote class=\"twitter-tweet\">\n\u003cp dir=\"ltr\" lang=\"en\">And in other news, online social networks don't work according to a new study of 300 people given MySpace accounts. \u003ca href=\"https://t.co/1J8GvdIP37\">https://t.co/1J8GvdIP37\u003c/a>\u003c/p>\n\u003cp>— Aaron Coleman (@aaronc) \u003ca href=\"https://twitter.com/aaronc/status/778594171036676096\">September 21, 2016\u003c/a>\u003c/p>\u003c/blockquote>\n\u003cp>But the study in \u003cem>The Lancet Diabetes & Endocrinology\u003c/em> does, indeed, use a newer if not the most advanced tracker, from the \u003ca href=\"http://www.idc.com/getdoc.jsp?containerId=prUS41284516\" target=\"_blank\">leading brand\u003c/a> in mobile health. This would seem to address Coleman's main quarrel with the earlier research. So we gave him a call to ask him what he thought.\u003c/p>\n\u003cp>\"They used an actual Fitbit in the intervention, which is an improvement over the last study in terms of trying to make it applicable to modern wearables,\" he says. But he didn't think the results could be \"generalized into day-to-day Fibit wearing.\"\u003c/p>\n\u003cp>In the case of Fitbits, Coleman contends, \"There's so many other components -- a social network component and having friends involved -- that make the experience.\"\u003c/p>\n\u003cp>He says taking more steps, which is what the study incentivized, is not necessarily the right goal. (He personally uses other measures such as heart rate in his fitness regimen.) And he thought the study's design did not equate to use of the devices in the real-world.\u003c/p>\n\u003cp>\"I don't know if incentivizing and handing them a device generalizes to daily life,\" he says.\u003c/p>\n\u003cp>As for Fitbit itself, the company issued a statement last week in response to the study. \"We are confident in the positive results our millions of users have seen from using Fitbit products,\" it read. The statement went on to say the company was in the process of improving its trackers.\u003c/p>\n\u003cp>The study's lead author, Eric Finkelstein, acknowledged that some of the newer fitness wearables have more advanced features, like exercise prompts and social media functions, but he still thinks it is unlikely people will radically change their exercise regimes without a more comprehensive approach.\u003c/p>\n\u003cp>“These trackers can encourage people to take more steps, but it still seems like these random extra steps aren’t enough to really improve your health,” he says.\u003c/p>\n\u003cp>Emmanuel Stamatakis, a physical activity expert at the University of Sydney, who was not part of the study, agreed. \"We should not be so naive to believe that simply by giving a sleek-looking gadget to someone, they will change deeply rooted lifestyle habits,\" he says.\u003c/p>\n\u003cp>In the meantime, Fitbit last week released a \u003ca href=\"https://www.springbuk.com/wearable-study/#top\" target=\"_blank\">case study \u003c/a>that it says shows employers can save money in health care costs if employees use the company's devices. The Verge critiques that study \u003ca href=\"http://www.theverge.com/2016/10/5/13176236/fitbit-study-corporate-wellness-health-care-savings\" target=\"_blank\">here\u003c/a>.\u003c/p>\n\u003cp>Fitabase also last week made public a \"\u003ca href=\"https://www.fitabase.com/research-library/\" target=\"_blank\">Fitbit Research Library\u003c/a>\" with 167 studies assessing or using the devices.\u003c/p>\n\u003cp>\u003cem>Associated Press contributed to this report.\u003c/em>\u003c/p>\n\u003cp> \u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp> \u003c/p>\n\n",
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"excerpt": "A study published last week found individuals incentivized to wear a Fitbit Zip tracker showed, after one year, no improvement in weight, blood pressure and cardiorespiratory fitness measures.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>A couple of weeks ago, it was a \u003ca href=\"http://jama.jamanetwork.com/article.aspx?articleid=2553448\" target=\"_blank\">study\u003c/a> published in JAMA, the Journal of the American Medical Association, that found an activity tracker \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/09/20/weight-loss-study-finds-fitness-tracker-is-no-help/\" target=\"_blank\">failed to help users lose weight\u003c/a>.\u003c/p>\n\u003cp>Next came headlines like \"\u003ca class=\"_sQb\" href=\"http://www.cosmopolitan.com/health-fitness/a3617025/fitness-trackers-dont-help-you-lose-weight-after-all/\" target=\"_blank\">Fitness Trackers Don't Help You Lose Weight, After All\u003c/a>\" (in Cosmo, no less).\u003c/p>\n\u003caside class=\"pullquote alignright\">Study finds no improvement in health of Fitbit Zip users. But are the results translatable to real life?\u003c/aside>\n\u003cp>Now The Lancet Diabetes & Endocrinology has published a \u003ca href=\"http://www.thelancet.com/journals/landia/article/PIIS2213-8587(16)30284-4/fulltext\" target=\"_blank\">study\u003c/a> that found individuals who got cash or charity donation incentives to wear a Fitbit Zip activity tracker showed, after one year, no improvement in weight, blood pressure and other fitness measures\u003ca href=\"https://www.google.com/search?q=maximum+oxygen+consumption\" target=\"_blank\">.\u003c/a>\u003c/p>\n\u003cp>The study recruited 800 employees, aged 21-65, from 13 different companies in Singapore. It was designed to measure the Fitbits' impacts on health outcomes and how financial incentives affected peoples' use of the device.\u003c/p>\n\u003cp>Participants were randomly placed in four different groups, two of which were given the Fitbits plus weekly financial incentives, with a high of $30 awarded for logging 70,000 or more steps. Participants in one of the cash-incentive groups could keep the money; people in the other had to donate it to a charity of their choice. A third group got the Fitbit Zip and access to Fitbit's website but no incentives; and the fourth, a control group, was given no trackers, just some information about exercise.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The people who got to pocket the cash or donate it to charity logged more daily steps each week than the people in the non-incentivized groups. The cash group also saw a significantly smaller attrition rate -- after six months, just 12 percent of that group had stopped wearing the devices.\u003c/p>\n\u003cp>\u003cstrong>No Cash, No Fitbit\u003c/strong>\u003c/p>\n\u003cp>But the incentives stopped at the six-month mark. Over the six months after that, by the end of a full year from the study's start, 90 percent of participants in all groups had stopped wearing the devices.\u003c/p>\n\u003cp>And ... no one had a significant improvement in any health measure.\u003c/p>\n\u003cp>The researchers attributed the lack of improved health to the reality that an increase in steps does not necessarily translate to much of a boost in moderate-intensity and vigorous-intensity physical activity.\u003c/p>\n\u003cp>So what is the conclusion here?\u003c/p>\n\u003cp>\"Although other incentive strategies might generate greater increases in step activity and improvements in health outcomes,\" the researchers wrote, \"incentives would probably need to be in place long term to avoid any potential decrease in physical activity resulting from discontinuation.\"\u003c/p>\n\u003cp>The lack of any observable health benefits from use of the trackers, they wrote, called into question \"the value of these devices for health promotion.\"\u003c/p>\n\u003cp>\u003cstrong>Not So Fast ...\u003c/strong>\u003c/p>\n\u003cp>A different \u003ca href=\"http://preview.thenewsmarket.com/Previews/JOUR/DocumentAssets/448807.pdf\" target=\"_blank\">study\u003c/a> we mentioned earlier, published in \u003cem>JAMA \u003c/em>last month, found that those who were put on a weight-loss plan encompassing diet, exercise and counseling actually \u003cem>lost more weight\u003c/em> than those who were given the same plus a fitness tracker. That didn't look too good for Team Digital Health.\u003c/p>\n\u003cp>But not everyone thought the study was relevant. Aaron Coleman, founder and CEO of Fitabase, a company that makes data tools \"which make Fitbits awesome in research,\" published a \u003ca href=\"https://medium.com/@aaroncoleman/its-not-time-to-throw-away-your-fitbit-but-it-is-time-to-rethink-how-to-do-research-94dc498eb63f#.iy10v11qg\">piece\u003c/a> on Medium criticizing news reports that failed to note that the device the users gave participants is now obsolete.\u003c/p>\n\u003cblockquote>\u003cp>The problem? The device used in the intervention bears no resemblance to a “wearable” as we’d call it today. It was ... a discontinued, very clunky, very clinical looking arm strap and sensor brick called the Bodymedia FIT Core.\u003c/p>\n\u003cp id=\"7802\" class=\"graf graf--p graf-after--figure\">Even the amount of data collected in the study suggests that the term “wearable” may be a bit of a stretch, as on the days that participants wore the device, the median wear time was 4 hours (241.1 min/d to be exact).\u003c/p>\n\u003cp>To equate the user experience of today’s modern wearables, as many have done with this, got me a little sarcastic…\u003c/p>\u003c/blockquote>\n\u003cblockquote class=\"twitter-tweet\">\n\u003cp dir=\"ltr\" lang=\"en\">And in other news, online social networks don't work according to a new study of 300 people given MySpace accounts. \u003ca href=\"https://t.co/1J8GvdIP37\">https://t.co/1J8GvdIP37\u003c/a>\u003c/p>\n\u003cp>— Aaron Coleman (@aaronc) \u003ca href=\"https://twitter.com/aaronc/status/778594171036676096\">September 21, 2016\u003c/a>\u003c/p>\u003c/blockquote>\n\u003cp>But the study in \u003cem>The Lancet Diabetes & Endocrinology\u003c/em> does, indeed, use a newer if not the most advanced tracker, from the \u003ca href=\"http://www.idc.com/getdoc.jsp?containerId=prUS41284516\" target=\"_blank\">leading brand\u003c/a> in mobile health. This would seem to address Coleman's main quarrel with the earlier research. So we gave him a call to ask him what he thought.\u003c/p>\n\u003cp>\"They used an actual Fitbit in the intervention, which is an improvement over the last study in terms of trying to make it applicable to modern wearables,\" he says. But he didn't think the results could be \"generalized into day-to-day Fibit wearing.\"\u003c/p>\n\u003cp>In the case of Fitbits, Coleman contends, \"There's so many other components -- a social network component and having friends involved -- that make the experience.\"\u003c/p>\n\u003cp>He says taking more steps, which is what the study incentivized, is not necessarily the right goal. (He personally uses other measures such as heart rate in his fitness regimen.) And he thought the study's design did not equate to use of the devices in the real-world.\u003c/p>\n\u003cp>\"I don't know if incentivizing and handing them a device generalizes to daily life,\" he says.\u003c/p>\n\u003cp>As for Fitbit itself, the company issued a statement last week in response to the study. \"We are confident in the positive results our millions of users have seen from using Fitbit products,\" it read. The statement went on to say the company was in the process of improving its trackers.\u003c/p>\n\u003cp>The study's lead author, Eric Finkelstein, acknowledged that some of the newer fitness wearables have more advanced features, like exercise prompts and social media functions, but he still thinks it is unlikely people will radically change their exercise regimes without a more comprehensive approach.\u003c/p>\n\u003cp>“These trackers can encourage people to take more steps, but it still seems like these random extra steps aren’t enough to really improve your health,” he says.\u003c/p>\n\u003cp>Emmanuel Stamatakis, a physical activity expert at the University of Sydney, who was not part of the study, agreed. \"We should not be so naive to believe that simply by giving a sleek-looking gadget to someone, they will change deeply rooted lifestyle habits,\" he says.\u003c/p>\n\u003cp>In the meantime, Fitbit last week released a \u003ca href=\"https://www.springbuk.com/wearable-study/#top\" target=\"_blank\">case study \u003c/a>that it says shows employers can save money in health care costs if employees use the company's devices. The Verge critiques that study \u003ca href=\"http://www.theverge.com/2016/10/5/13176236/fitbit-study-corporate-wellness-health-care-savings\" target=\"_blank\">here\u003c/a>.\u003c/p>\n\u003cp>Fitabase also last week made public a \"\u003ca href=\"https://www.fitabase.com/research-library/\" target=\"_blank\">Fitbit Research Library\u003c/a>\" with 167 studies assessing or using the devices.\u003c/p>\n\u003cp>\u003cem>Associated Press contributed to this report.\u003c/em>\u003c/p>\n\u003cp> \u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cp>The noose is drawing ever-tighter around Theranos. The Wall Street Journal is reporting the San Francisco hedge fund \u003ca href=\"http://www.bloomberg.com/research/stocks/private/snapshot.asp?privcapId=24258473\" target=\"_blank\">Partner Fund Management\u003c/a> is suing the company and its founder, Elizabeth Holmes, for \"engaging in securities fraud and other violations,\" according to a document reviewed by the Journal. The fund has invested nearly $100 million in Theranos, the paper says.\u003c/p>\n\u003cp>The company is already being sued by patients seeking class-action status in complaints related to inaccurate blood tests.\u003c/p>\n\u003cp>Last week, Theranos said it was \u003ca href=\"https://ww2.kqed.org/futureofyou/2016/10/05/theranos-labs/\" target=\"_blank\">getting out of the consumer blood-testing business\u003c/a>, shutting down a handful of remaining blood-testing centers and shuttering its labs.\u003c/p>\n\u003cp>Read the Journal story below ...\u003c/p>\n\u003cp>http://www.wsj.com/articles/major-investor-sues-theranos-1476139613\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\u003cp>\u003c/p>\n",
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"info": "What kind of no sabo word is Hyphenación? For us, it’s about living within a hyphenation. Like being a third-gen Mexican-American from the Texas border now living that Bay Area Chicano life. Like Xorje! Each week we bring together a couple of hyphenated Latinos to talk all about personal life choices: family, careers, relationships, belonging … everything is on the table. ",
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"info": "Our flagship program, helmed by Kai Ryssdal, examines what the day in money delivered, through stories, conversations, newsworthy numbers and more. Updated Monday through Friday at about 3:30 p.m. PT.",
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"info": "The MindShift podcast explores the innovations in education that are shaping how kids learn. Hosts Ki Sung and Katrina Schwartz introduce listeners to educators, researchers, parents and students who are developing effective ways to improve how kids learn. We cover topics like how fed-up administrators are developing surprising tactics to deal with classroom disruptions; how listening to podcasts are helping kids develop reading skills; the consequences of overparenting; and why interdisciplinary learning can engage students on all ends of the traditional achievement spectrum. This podcast is part of the MindShift education site, a division of KQED News. KQED is an NPR/PBS member station based in San Francisco. You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>",
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"info": "For decades, the process for how police police themselves has been inconsistent – if not opaque. In some states, like California, these proceedings were completely hidden. After a new police transparency law unsealed scores of internal affairs files, our reporters set out to examine these cases and the shadow world of police discipline. On Our Watch brings listeners into the rooms where officers are questioned and witnesses are interrogated to find out who this system is really protecting. Is it the officers, or the public they've sworn to serve?",
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"tagline": "Politics from a personal perspective",
"info": "Political Breakdown is a new series that explores the political intersection of California and the nation. Each week hosts Scott Shafer and Marisa Lagos are joined with a new special guest to unpack politics -- with personality — and offer an insider’s glimpse at how politics happens.",
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"possible": {
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"info": "Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? Each episode also includes a short fiction story generated by advanced AI GPT-4, serving as a thought-provoking springboard to speculate how humanity could leverage technology for good.",
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"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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},
"radiolab": {
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"info": "A two-time Peabody Award-winner, Radiolab is an investigation told through sounds and stories, and centered around one big idea. In the Radiolab world, information sounds like music and science and culture collide. Hosted by Jad Abumrad and Robert Krulwich, the show is designed for listeners who demand skepticism, but appreciate wonder. WNYC Studios is the producer of other leading podcasts including Freakonomics Radio, Death, Sex & Money, On the Media and many more.",
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},
"reveal": {
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"info": "Created by The Center for Investigative Reporting and PRX, Reveal is public radios first one-hour weekly radio show and podcast dedicated to investigative reporting. Credible, fact based and without a partisan agenda, Reveal combines the power and artistry of driveway moment storytelling with data-rich reporting on critically important issues. The result is stories that inform and inspire, arming our listeners with information to right injustices, hold the powerful accountable and improve lives.Reveal is hosted by Al Letson and showcases the award-winning work of CIR and newsrooms large and small across the nation. In a radio and podcast market crowded with choices, Reveal focuses on important and often surprising stories that illuminate the world for our listeners.",
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"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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},
"science-friday": {
"id": "science-friday",
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"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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