Alleged Genetic Discrimination at California School Strikes a Nerve, Raises More Questions
Palo Alto Student Was Asked to Leave School Because of His DNA
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The program is part of an ongoing collaboration between the \u003ca href=\"http://genetics.stanford.edu/\">Stanford Department of Genetics\u003c/a> and \u003ca href=\"http://www.thetech.org/\">The Tech Museum of Innovation\u003c/a>. 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One in particular -- \"Here we go!\" -- succinctly captures the fear that we're on a fast Road to Dystopia due to new genetic-testing capabilities.\u003c/p>\n\u003caside class=\"“pullquote alignright\">“The allegations in this case present a quintessential ADA claim ... that a child was denied access to his school based on prejudices, stereotypes, and unfounded fear.”\u003cbr>\n\u003ccite>From a brief filed by the Dept. of Justice and Dept. of Education\u003c/cite>\u003c/aside>\n\u003cp>To recap: Palo Alto Unified School District tried in 2012 to forcibly transfer 11-year-old Colman Chadam -- who did not have CF, just the genes for it -- in order to protect two students at his school who \u003cem>actually \u003c/em>had the disease. The reason: a high risk exists among those with CF to give each other lung infections. As the family sought a court injunction, the district allowed him to return after missing 11 days of school.\u003c/p>\n\u003cp>One remark noted that the post did not mention the California Genetic Information Nondiscrimination Act (CalGINA), signed into law by Gov. Jerry Brown in 2011. That legislation amended existing state non-discrimination laws, including those in education, to prohibit discrimination based on genetic information.\u003c/p>\n\u003cp>The rationale behind CalGINA was to close gaps in protection afforded by the federal Genetic Nondiscrimination Act (plain GINA). As Starr noted in his post on the Palo Alto case, GINA only covers discrimination in employment and health insurance.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>But Colman's parents, who sued Palo Alto Unified School District over the incident in 2014, did not rely on CalGINA. The case was filed in federal court, and it asserted the school district had violated their rights under the \u003ca href=\"http://www.ada.gov/\" target=\"_blank\">Americans With Disabilies Act\u003c/a>, the \u003ca href=\"http://www.dol.gov/oasam/regs/statutes/sec504.htm\" target=\"_blank\">Rehabilitation Act of 1973\u003c/a>, and the First Amendment's constitutional right to privacy. It also claimed negligence.\u003c/p>\n\u003cp>None of those arguments succeeded in court -- the suit was dismissed, and last month the family filed an appeal with the Ninth Circuit Court in San Francisco.\u003c/p>\n\u003cp>The \u003ca href=\"https://www.aclu.org/genetic-discrimination-workplace-factsheet\" target=\"_blank\">ACLU\u003c/a> and \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3035561/\" target=\"_blank\">others\u003c/a> who have studied the issue do not think the courts will interpret the ADA as applying to genetic discrimination. Given that uncertainty, it's logical to ask why the family didn't go to state court and invoke CalGINA -- which, after all was specifically designed to prevent genetic discrimination -- instead of suing under ADA.\u003c/p>\n\u003cp>The lawyer for the Chadams has an answer.\u003c/p>\n\u003cp>\"A lawsuit under California law would, even if it would prevail, affect only California,\" attorney Stephen R. Jaffe told me on Tuesday. \"This [federal suit] would affect other states. It would have a much broader application.\"\u003c/p>\n\u003cp>The family is seeking unspecified monetary damages, but Jaffe said a large part of their motivation is \"making some good law on the subject, where there's a need for it to be made, particularly under ADA.\"\u003c/p>\n\u003cp>He noted the U.S. departments of education and justice have filed an \u003ca href=\"https://www.documentcloud.org/documents/2701245-DOJ-Amicus-Brief.html\" target=\"_blank\">amicus brief\u003c/a> in support of the Chadams' ADA claims.\u003c/p>\n\u003cp>\"The allegations in this case present a quintessential ADA claim -- allegations that a child was denied access to his school based on prejudices, stereotypes, and unfounded fear,\" the government said in its filing.\u003c/p>\n\u003cp>Palo Alto Unified said in an emailed statement that it \"cares about and is committed to the safety and well-being of its student population,\" and that it \"continues to agree with the ruling of the Federal District Court.\"\u003c/p>\n\u003cp>Jaffe said if the appeal with the Ninth Circuit fails, he will take the Chadam family's case to the U.S. Supreme Court.\u003c/p>\n\u003cp>It's worth noting why the circuit court rebuffed the ADA claims in the lawsuit, reasoning Jaffe called \"tortured and strained.\"\u003c/p>\n\u003cp>Noting Title II of the ADA allows public officials to exclude individuals if they believe they \"pose a direct threat to the health and safety of others,\" and provided the assessment is \"based on reasonable judgement based on current medical knowledge,\" Judge Claudia Wilken wrote that the family failed to show that the district \"did not act in an effort to preserve the safe operation of the school,\" or that their son's \"brief exclusion ... from the school closest to his home, in light of the risk involved, was not reasonable given the information PAUSD had.\" She went on:\u003c/p>\n\u003cblockquote>\u003cp>In fact, they allege that PAUSD told them it was basing its decision on medical evidence provided both by [a physician's letter] and a \"top Stanford doctor.\" They state that PAUSD made its decisions on the basis of its belief that C.C.'s presence in the school was a serious threat to other students. Furthermore, C.C. was allowed, within two weeks, to return to the school closest to his home, indicating that PAUSD had changed its policy with regard to C.C.\u003c/p>\n\u003cp>In short, the Chadams admit that PAUSD believed the risk to other children was real and based on medical evidence.\u003c/p>\u003c/blockquote>\n\u003cp>\u003cstrong>Don't Ask, Don't Tell?\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>The suit alleges that ADA's Title II applies because Colman was perceived as having an impairment, even though he didn't.\u003c/p>\n\u003cp>It's a perception that might have been avoided, had the boy's mother not disclosed her son's genetic vulnerability on a school form. That set off a chain of haphazard events in which, according to the complaint, teachers at the school told the parents of the two students with CF about Colman's genes, dueling letters from medical doctors were produced, and Colman was removed from his classroom.\u003c/p>\n\u003cp>Why did the Chadams disclose their son's genetic susceptibility to the school in the first place?\u003c/p>\n\u003cp>\"That's a good question,\" Jaffe said. \"Mrs. Chadam was not required to do so. She was trying to be honest and forthcoming -- she was just enrolling him\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"If she had to do it again, I think she wouldn’t.\"\u003c/p>\n\n","blocks":[],"excerpt":"The federal government says the incident represents a \"quintessential ADA case,\" but a judge disagreed. ","status":"publish","parent":0,"modified":1476936267,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":27,"wordCount":1030},"headData":{"title":"Alleged Genetic Discrimination at California School Strikes a Nerve, Raises More Questions | KQED","description":"The federal government says the incident represents a "quintessential ADA case," but a judge disagreed. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Alleged Genetic Discrimination at California School Strikes a Nerve, Raises More Questions","datePublished":"2016-02-10T19:10:13.000Z","dateModified":"2016-10-20T04:04:27.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"109852 http://ww2.kqed.org/futureofyou/?p=109852","disqusUrl":"https://ww2.kqed.org/futureofyou/2016/02/10/alleged-genetic-discrimination-at-california-school-strikes-a-nerve-and-raises-more-questions/","disqusTitle":"Alleged Genetic Discrimination at California School Strikes a Nerve, Raises More Questions","path":"/futureofyou/109852/alleged-genetic-discrimination-at-california-school-strikes-a-nerve-and-raises-more-questions","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>We're seeing a lot of interest in \u003ca href=\"http://ww2.kqed.org/futureofyou/2016/02/08/student-was-asked-to-leave-school-because-of-his-dna/\">Barry Starr's post\u003c/a> about the student who was forced to leave school for a time based on a genetic predisposition to cystic fibrosis.\u003c/p>\n\u003cp>Most of the comments from our readers have expressed some degree of WTF. One in particular -- \"Here we go!\" -- succinctly captures the fear that we're on a fast Road to Dystopia due to new genetic-testing capabilities.\u003c/p>\n\u003caside class=\"“pullquote alignright\">“The allegations in this case present a quintessential ADA claim ... that a child was denied access to his school based on prejudices, stereotypes, and unfounded fear.”\u003cbr>\n\u003ccite>From a brief filed by the Dept. of Justice and Dept. of Education\u003c/cite>\u003c/aside>\n\u003cp>To recap: Palo Alto Unified School District tried in 2012 to forcibly transfer 11-year-old Colman Chadam -- who did not have CF, just the genes for it -- in order to protect two students at his school who \u003cem>actually \u003c/em>had the disease. The reason: a high risk exists among those with CF to give each other lung infections. As the family sought a court injunction, the district allowed him to return after missing 11 days of school.\u003c/p>\n\u003cp>One remark noted that the post did not mention the California Genetic Information Nondiscrimination Act (CalGINA), signed into law by Gov. Jerry Brown in 2011. That legislation amended existing state non-discrimination laws, including those in education, to prohibit discrimination based on genetic information.\u003c/p>\n\u003cp>The rationale behind CalGINA was to close gaps in protection afforded by the federal Genetic Nondiscrimination Act (plain GINA). As Starr noted in his post on the Palo Alto case, GINA only covers discrimination in employment and health insurance.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>But Colman's parents, who sued Palo Alto Unified School District over the incident in 2014, did not rely on CalGINA. The case was filed in federal court, and it asserted the school district had violated their rights under the \u003ca href=\"http://www.ada.gov/\" target=\"_blank\">Americans With Disabilies Act\u003c/a>, the \u003ca href=\"http://www.dol.gov/oasam/regs/statutes/sec504.htm\" target=\"_blank\">Rehabilitation Act of 1973\u003c/a>, and the First Amendment's constitutional right to privacy. It also claimed negligence.\u003c/p>\n\u003cp>None of those arguments succeeded in court -- the suit was dismissed, and last month the family filed an appeal with the Ninth Circuit Court in San Francisco.\u003c/p>\n\u003cp>The \u003ca href=\"https://www.aclu.org/genetic-discrimination-workplace-factsheet\" target=\"_blank\">ACLU\u003c/a> and \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3035561/\" target=\"_blank\">others\u003c/a> who have studied the issue do not think the courts will interpret the ADA as applying to genetic discrimination. Given that uncertainty, it's logical to ask why the family didn't go to state court and invoke CalGINA -- which, after all was specifically designed to prevent genetic discrimination -- instead of suing under ADA.\u003c/p>\n\u003cp>The lawyer for the Chadams has an answer.\u003c/p>\n\u003cp>\"A lawsuit under California law would, even if it would prevail, affect only California,\" attorney Stephen R. Jaffe told me on Tuesday. \"This [federal suit] would affect other states. It would have a much broader application.\"\u003c/p>\n\u003cp>The family is seeking unspecified monetary damages, but Jaffe said a large part of their motivation is \"making some good law on the subject, where there's a need for it to be made, particularly under ADA.\"\u003c/p>\n\u003cp>He noted the U.S. departments of education and justice have filed an \u003ca href=\"https://www.documentcloud.org/documents/2701245-DOJ-Amicus-Brief.html\" target=\"_blank\">amicus brief\u003c/a> in support of the Chadams' ADA claims.\u003c/p>\n\u003cp>\"The allegations in this case present a quintessential ADA claim -- allegations that a child was denied access to his school based on prejudices, stereotypes, and unfounded fear,\" the government said in its filing.\u003c/p>\n\u003cp>Palo Alto Unified said in an emailed statement that it \"cares about and is committed to the safety and well-being of its student population,\" and that it \"continues to agree with the ruling of the Federal District Court.\"\u003c/p>\n\u003cp>Jaffe said if the appeal with the Ninth Circuit fails, he will take the Chadam family's case to the U.S. Supreme Court.\u003c/p>\n\u003cp>It's worth noting why the circuit court rebuffed the ADA claims in the lawsuit, reasoning Jaffe called \"tortured and strained.\"\u003c/p>\n\u003cp>Noting Title II of the ADA allows public officials to exclude individuals if they believe they \"pose a direct threat to the health and safety of others,\" and provided the assessment is \"based on reasonable judgement based on current medical knowledge,\" Judge Claudia Wilken wrote that the family failed to show that the district \"did not act in an effort to preserve the safe operation of the school,\" or that their son's \"brief exclusion ... from the school closest to his home, in light of the risk involved, was not reasonable given the information PAUSD had.\" She went on:\u003c/p>\n\u003cblockquote>\u003cp>In fact, they allege that PAUSD told them it was basing its decision on medical evidence provided both by [a physician's letter] and a \"top Stanford doctor.\" They state that PAUSD made its decisions on the basis of its belief that C.C.'s presence in the school was a serious threat to other students. Furthermore, C.C. was allowed, within two weeks, to return to the school closest to his home, indicating that PAUSD had changed its policy with regard to C.C.\u003c/p>\n\u003cp>In short, the Chadams admit that PAUSD believed the risk to other children was real and based on medical evidence.\u003c/p>\u003c/blockquote>\n\u003cp>\u003cstrong>Don't Ask, Don't Tell?\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>The suit alleges that ADA's Title II applies because Colman was perceived as having an impairment, even though he didn't.\u003c/p>\n\u003cp>It's a perception that might have been avoided, had the boy's mother not disclosed her son's genetic vulnerability on a school form. That set off a chain of haphazard events in which, according to the complaint, teachers at the school told the parents of the two students with CF about Colman's genes, dueling letters from medical doctors were produced, and Colman was removed from his classroom.\u003c/p>\n\u003cp>Why did the Chadams disclose their son's genetic susceptibility to the school in the first place?\u003c/p>\n\u003cp>\"That's a good question,\" Jaffe said. \"Mrs. Chadam was not required to do so. She was trying to be honest and forthcoming -- she was just enrolling him\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"If she had to do it again, I think she wouldn’t.\"\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/109852/alleged-genetic-discrimination-at-california-school-strikes-a-nerve-and-raises-more-questions","authors":["80"],"programs":["futureofyou_54"],"categories":["futureofyou_1064"],"tags":["futureofyou_760","futureofyou_758","futureofyou_80"],"featImg":"futureofyou_110261","label":"futureofyou_54"},"futureofyou_108369":{"type":"posts","id":"futureofyou_108369","meta":{"index":"posts_1591205157","site":"futureofyou","id":"108369","score":null,"sort":[1454958239000]},"guestAuthors":[],"slug":"student-was-asked-to-leave-school-because-of-his-dna","title":"Palo Alto Student Was Asked to Leave School Because of His DNA","publishDate":1454958239,"format":"standard","headTitle":"Future of You | KQED Future of You | KQED Science","labelTerm":{"term":54,"site":"futureofyou"},"content":"\u003cp>To find a society where a student is forced to leave school because of his genes, you might think you’d need to watch \"\u003ca href=\"https://en.wikipedia.org/wiki/Gattaca\">Gattaca\u003c/a>\" or pick up a dystopian novel.\u003c/p>\n\u003cp>As it turns out, you wouldn't need to immerse yourself in fiction. This exact scenario occurred at a middle school in Palo Alto, California.\u003c/p>\n\u003caside class=\"pullquote alignright\">Unless something is done to strengthen legal protections, anyone who is genetically tested could be discriminated against.\u003c/aside>\n\u003cp>And unless something is done to strengthen our legal protections, it could be just the tip of the iceberg. Any of us who learns about our DNA through direct-to-consumer tests like 23andMe, newborn genetic testing or gene sequencing at the doctor’s office could be genetically discriminated against too.\u003c/p>\n\u003cp>\u003cstrong>School Boots Out Sixth Grader Over Predisposition to Disease\u003c/strong>\u003c/p>\n\u003cp>In 2012, Jordan Middle School tried to force 11-year-old Colman Chadam to transfer to another school, not because he did something wrong or had a contagious disease, but because of his DNA.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>[contextly_sidebar id=\"RWAfIZvPfGk0QXWSsjL020T1kdGZFuZd\"]Colman had been born with a heart condition. To try to figure out what was wrong, the doctors had performed a lot of genetic tests, one of which found an increased risk for cystic fibrosis, a very severe genetic condition.\u003c/p>\n\u003cp>Twelve years later, Colman's parents, as a simple precaution, filled out a medical form telling the school about his genetic results even though he had none of the symptoms of CF. He did not have the disease.\u003c/p>\n\u003cp>But the student population at Jordan Middle School included two siblings who had CF. Because there is a high risk for people with the disease to give each other lung infections, it is important to always keep them at least 6 feet away from each other.\u003c/p>\n\u003cp>After teachers at the school told the parents of these students about Colman's genetics, the district ordered Colman's transfer, despite the fact that he did not have the disease.\u003c/p>\n\u003cp>His parents took the district to court. After Colman missed 11 days of school, a settlement was reached to \u003ca href=\"http://www.sfgate.com/bayarea/article/6th-grader-back-in-school-despite-genes-4010983.php\" target=\"_blank\">let him return\u003c/a>.\u003c/p>\n\u003cp>But the Chadams filed a suit in federal court, alleging unlawful disclosure of Colman's private medical information. The case was dismissed, but last month the Chadams filed an \u003ca href=\"https://assets.documentcloud.org/documents/2701506/Opening-Brief.pdf\" target=\"_blank\">appeal to the Ninth Circuit Court\u003c/a>.\u003c/p>\n\u003cp>All of this brouhaha occurred even though Colman did not have CF and posed no risk to anyone. The specific genetic differences he had are in a gray area of genetics known as \u003ca href=\"http://ghr.nlm.nih.gov/glossary=penetrance\">variable penetrance\u003c/a>.\u003c/p>\n\u003cp>Some people with his DNA end up with CF and some don't. Up to that time, Colman had not developed any symptoms.\u003c/p>\n\u003cp>Perhaps it's not surprising that well-meaning people at Jordan Middle School did not understand these subtleties and misinterpreted Colman's results. What is surprising is that there is so little legal protection against this sort of misunderstanding.\u003c/p>\n\u003cfigure id=\"attachment_108371\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-108371\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/02/BushSignsGINA2008-800x510.jpg\" alt=\"In 2008 President Bush signed the Genetics Information Nondiscrimination Act (GINA) . It did not protect a middle school student from being asked to transfer to a new school because of his DNA. \" width=\"800\" height=\"510\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/02/BushSignsGINA2008-800x510.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/BushSignsGINA2008-400x255.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/BushSignsGINA2008-768x489.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/BushSignsGINA2008-1180x752.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/BushSignsGINA2008-960x612.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/BushSignsGINA2008.jpg 1400w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">In 2008 President Bush signed the Genetics Information Nondiscrimination Act (GINA) . It did not protect a middle school student from being asked to transfer to a new school because of his DNA. \u003ccite>(NHGRI)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Surprisingly Weak Protections\u003c/strong>\u003c/p>\n\u003cp>Back in 2008 President Bush signed the \u003ca href=\"http://ginahelp.org/\" target=\"_blank\">Genetics Information Nondiscrimination Act\u003c/a> (GINA). Unfortunately for the Chadams, it only covers employment and health insurance discrimination.\u003c/p>\n\u003cp>This oversight needs to be addressed sooner rather than later.\u003c/p>\n\u003cp>Every day more and more people learn about potential disease risks from their DNA. Many people will have results similar to Colman's that could be used against them.\u003c/p>\n\u003cp>\u003cstrong>The Perils of Testing\u003c/strong>\u003c/p>\n\u003cp>DNA is more complicated than a lot of people think. For example, scientists have found over 2000 DNA variants or differences in CFTR, the key gene involved in cystic fibrosis.\u003c/p>\n\u003cp>Without additional protections in place, CF screening programs like the one described \u003ca href=\"http://ww2.kqed.org/futureofyou/2016/02/01/stanford-develops-fast-affordable-genetic-test-for-newborns/\">here\u003c/a> could place many more people in Colman Chadam's situation.\u003c/p>\n\u003cp>Multiply these risks by 10, 100, 1000 or even 10,000 for some of the proposed screens where \u003ca href=\"http://genomemag.com/a-newborn-challenge/#.Vrj3vfkrKM8\">every gene of a newborn might be looked at\u003c/a> (exome sequencing), and you begin to see what we're up against. People will be flooded with a lot of hard-to-understand information that is easy to misinterpret.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>This doesn't mean genetic testing, which can have many benefits, shouldn't be done. We just need to ensure it isn't used to discriminate, as we head toward a world where everyone knows their DNA but doesn’t necessarily understand genetics.\u003c/p>\n\n","blocks":[],"excerpt":"Case shows the perils of knowing someone's DNA without understanding genetics.","status":"publish","parent":0,"modified":1454976972,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":25,"wordCount":780},"headData":{"title":"Palo Alto Student Was Asked to Leave School Because of His DNA | KQED","description":"Case shows the perils of knowing someone's DNA without understanding genetics.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Palo Alto Student Was Asked to Leave School Because of His DNA","datePublished":"2016-02-08T19:03:59.000Z","dateModified":"2016-02-09T00:16:12.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"108369 http://ww2.kqed.org/futureofyou/?p=108369","disqusUrl":"https://ww2.kqed.org/futureofyou/2016/02/08/student-was-asked-to-leave-school-because-of-his-dna/","disqusTitle":"Palo Alto Student Was Asked to Leave School Because of His DNA","path":"/futureofyou/108369/student-was-asked-to-leave-school-because-of-his-dna","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>To find a society where a student is forced to leave school because of his genes, you might think you’d need to watch \"\u003ca href=\"https://en.wikipedia.org/wiki/Gattaca\">Gattaca\u003c/a>\" or pick up a dystopian novel.\u003c/p>\n\u003cp>As it turns out, you wouldn't need to immerse yourself in fiction. This exact scenario occurred at a middle school in Palo Alto, California.\u003c/p>\n\u003caside class=\"pullquote alignright\">Unless something is done to strengthen legal protections, anyone who is genetically tested could be discriminated against.\u003c/aside>\n\u003cp>And unless something is done to strengthen our legal protections, it could be just the tip of the iceberg. Any of us who learns about our DNA through direct-to-consumer tests like 23andMe, newborn genetic testing or gene sequencing at the doctor’s office could be genetically discriminated against too.\u003c/p>\n\u003cp>\u003cstrong>School Boots Out Sixth Grader Over Predisposition to Disease\u003c/strong>\u003c/p>\n\u003cp>In 2012, Jordan Middle School tried to force 11-year-old Colman Chadam to transfer to another school, not because he did something wrong or had a contagious disease, but because of his DNA.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>Colman had been born with a heart condition. To try to figure out what was wrong, the doctors had performed a lot of genetic tests, one of which found an increased risk for cystic fibrosis, a very severe genetic condition.\u003c/p>\n\u003cp>Twelve years later, Colman's parents, as a simple precaution, filled out a medical form telling the school about his genetic results even though he had none of the symptoms of CF. He did not have the disease.\u003c/p>\n\u003cp>But the student population at Jordan Middle School included two siblings who had CF. Because there is a high risk for people with the disease to give each other lung infections, it is important to always keep them at least 6 feet away from each other.\u003c/p>\n\u003cp>After teachers at the school told the parents of these students about Colman's genetics, the district ordered Colman's transfer, despite the fact that he did not have the disease.\u003c/p>\n\u003cp>His parents took the district to court. After Colman missed 11 days of school, a settlement was reached to \u003ca href=\"http://www.sfgate.com/bayarea/article/6th-grader-back-in-school-despite-genes-4010983.php\" target=\"_blank\">let him return\u003c/a>.\u003c/p>\n\u003cp>But the Chadams filed a suit in federal court, alleging unlawful disclosure of Colman's private medical information. The case was dismissed, but last month the Chadams filed an \u003ca href=\"https://assets.documentcloud.org/documents/2701506/Opening-Brief.pdf\" target=\"_blank\">appeal to the Ninth Circuit Court\u003c/a>.\u003c/p>\n\u003cp>All of this brouhaha occurred even though Colman did not have CF and posed no risk to anyone. The specific genetic differences he had are in a gray area of genetics known as \u003ca href=\"http://ghr.nlm.nih.gov/glossary=penetrance\">variable penetrance\u003c/a>.\u003c/p>\n\u003cp>Some people with his DNA end up with CF and some don't. Up to that time, Colman had not developed any symptoms.\u003c/p>\n\u003cp>Perhaps it's not surprising that well-meaning people at Jordan Middle School did not understand these subtleties and misinterpreted Colman's results. What is surprising is that there is so little legal protection against this sort of misunderstanding.\u003c/p>\n\u003cfigure id=\"attachment_108371\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-108371\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/02/BushSignsGINA2008-800x510.jpg\" alt=\"In 2008 President Bush signed the Genetics Information Nondiscrimination Act (GINA) . It did not protect a middle school student from being asked to transfer to a new school because of his DNA. \" width=\"800\" height=\"510\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/02/BushSignsGINA2008-800x510.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/BushSignsGINA2008-400x255.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/BushSignsGINA2008-768x489.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/BushSignsGINA2008-1180x752.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/BushSignsGINA2008-960x612.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/02/BushSignsGINA2008.jpg 1400w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">In 2008 President Bush signed the Genetics Information Nondiscrimination Act (GINA) . It did not protect a middle school student from being asked to transfer to a new school because of his DNA. \u003ccite>(NHGRI)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003cstrong>Surprisingly Weak Protections\u003c/strong>\u003c/p>\n\u003cp>Back in 2008 President Bush signed the \u003ca href=\"http://ginahelp.org/\" target=\"_blank\">Genetics Information Nondiscrimination Act\u003c/a> (GINA). Unfortunately for the Chadams, it only covers employment and health insurance discrimination.\u003c/p>\n\u003cp>This oversight needs to be addressed sooner rather than later.\u003c/p>\n\u003cp>Every day more and more people learn about potential disease risks from their DNA. Many people will have results similar to Colman's that could be used against them.\u003c/p>\n\u003cp>\u003cstrong>The Perils of Testing\u003c/strong>\u003c/p>\n\u003cp>DNA is more complicated than a lot of people think. For example, scientists have found over 2000 DNA variants or differences in CFTR, the key gene involved in cystic fibrosis.\u003c/p>\n\u003cp>Without additional protections in place, CF screening programs like the one described \u003ca href=\"http://ww2.kqed.org/futureofyou/2016/02/01/stanford-develops-fast-affordable-genetic-test-for-newborns/\">here\u003c/a> could place many more people in Colman Chadam's situation.\u003c/p>\n\u003cp>Multiply these risks by 10, 100, 1000 or even 10,000 for some of the proposed screens where \u003ca href=\"http://genomemag.com/a-newborn-challenge/#.Vrj3vfkrKM8\">every gene of a newborn might be looked at\u003c/a> (exome sequencing), and you begin to see what we're up against. People will be flooded with a lot of hard-to-understand information that is easy to misinterpret.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>This doesn't mean genetic testing, which can have many benefits, shouldn't be done. We just need to ensure it isn't used to discriminate, as we head toward a world where everyone knows their DNA but doesn’t necessarily understand genetics.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/108369/student-was-asked-to-leave-school-because-of-his-dna","authors":["6177"],"programs":["futureofyou_54"],"categories":["futureofyou_452","futureofyou_1","futureofyou_73"],"tags":["futureofyou_733","futureofyou_758","futureofyou_757","futureofyou_80"],"featImg":"futureofyou_51","label":"futureofyou_54"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? Each episode also includes a short fiction story generated by advanced AI GPT-4, serving as a thought-provoking springboard to speculate how humanity could leverage technology for good.","airtime":"SUN 2pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Possible-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.possible.fm/","meta":{"site":"news","source":"Possible"},"link":"/radio/program/possible","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/possible/id1677184070","spotify":"https://open.spotify.com/show/730YpdUSNlMyPQwNnyjp4k"}},"1a":{"id":"1a","title":"1A","info":"1A is home to the national conversation. 1A brings on great guests and frames the best debate in ways that make you think, share and engage.","airtime":"MON-THU 11pm-12am","imageSrc":"https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/1a.jpg","officialWebsiteLink":"https://the1a.org/","meta":{"site":"news","source":"npr"},"link":"/radio/program/1a","subscribe":{"npr":"https://rpb3r.app.goo.gl/RBrW","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=1188724250&at=11l79Y&ct=nprdirectory","tuneIn":"https://tunein.com/radio/1A-p947376/","rss":"https://feeds.npr.org/510316/podcast.xml"}},"all-things-considered":{"id":"all-things-considered","title":"All Things Considered","info":"Every weekday, \u003cem>All Things Considered\u003c/em> hosts Robert Siegel, Audie Cornish, Ari Shapiro, and Kelly McEvers present the program's trademark mix of news, interviews, commentaries, reviews, and offbeat features. Michel Martin hosts on the weekends.","airtime":"MON-FRI 1pm-2pm, 4:30pm-6:30pm\u003cbr />SAT-SUN 5pm-6pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/All-Things-Considered-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.npr.org/programs/all-things-considered/","meta":{"site":"news","source":"npr"},"link":"/radio/program/all-things-considered"},"american-suburb-podcast":{"id":"american-suburb-podcast","title":"American Suburb: The Podcast","tagline":"The flip side of gentrification, told through one town","info":"Gentrification is changing cities across America, forcing people from neighborhoods they have long called home. Call them the displaced. Now those priced out of the Bay Area are looking for a better life in an unlikely place. American Suburb follows this migration to one California town along the Delta, 45 miles from San Francisco. But is this once sleepy suburb ready for them?","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/American-Suburb-Podcast-Tile-703x703-1.jpg","officialWebsiteLink":"/news/series/american-suburb-podcast","meta":{"site":"news","source":"kqed","order":"13"},"link":"/news/series/american-suburb-podcast/","subscribe":{"npr":"https://rpb3r.app.goo.gl/RBrW","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?mt=2&id=1287748328","tuneIn":"https://tunein.com/radio/American-Suburb-p1086805/","rss":"https://ww2.kqed.org/news/series/american-suburb-podcast/feed/podcast","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkMzMDExODgxNjA5"}},"baycurious":{"id":"baycurious","title":"Bay Curious","tagline":"Exploring the Bay Area, one question at a time","info":"KQED’s new podcast, Bay Curious, gets to the bottom of the mysteries — both profound and peculiar — that give the Bay Area its unique identity. And we’ll do it with your help! You ask the questions. You decide what Bay Curious investigates. 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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>","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Mindshift-Podcast-Tile-703x703-1.jpg","imageAlt":"KQED MindShift: How We Will Learn","officialWebsiteLink":"/mindshift/","meta":{"site":"news","source":"kqed","order":"2"},"link":"/podcasts/mindshift","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/mindshift-podcast/id1078765985","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM1NzY0NjAwNDI5","npr":"https://www.npr.org/podcasts/464615685/mind-shift-podcast","stitcher":"https://www.stitcher.com/podcast/kqed/stories-teachers-share","spotify":"https://open.spotify.com/show/0MxSpNYZKNprFLCl7eEtyx"}},"morning-edition":{"id":"morning-edition","title":"Morning Edition","info":"\u003cem>Morning Edition\u003c/em> takes listeners around the country and the world with multi-faceted stories and commentaries every weekday. 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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. 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