{"id":73571,"date":"2012-08-26T16:15:32","date_gmt":"2012-08-27T00:15:32","guid":{"rendered":"http:\/\/blogs.discovermagazine.com\/gnxp\/?p=17996"},"modified":"2012-08-26T16:15:32","modified_gmt":"2012-08-27T00:15:32","slug":"consent-and-genomics","status":"publish","type":"post","link":"https:\/\/www.razib.com\/wordpress\/2012\/08\/26\/consent-and-genomics\/","title":{"rendered":"Consent and genomics"},"content":{"rendered":"<p>Interesting story in <em>The New York Times<\/em>, <a href=\"http:\/\/www.nytimes.com\/2012\/08\/26\/health\/research\/with-rise-of-gene-sequencing-ethical-puzzles.html?partner=rss&amp;emc=rss&amp;pagewanted=print\">Genes Now Tell Doctors Secrets They Can\u2019t Utter<\/a>:<\/p>\n<blockquote>\n<p>One of the first cases came a decade ago, just as the new age of genetics was beginning. A young woman with a strong family history of breast and ovarian cancer enrolled in a study trying to find cancer genes that, when mutated, greatly increase the risk of breast cancer. But the woman, terrified by her family history,<strong> also intended to have her breasts removed prophylactically.<\/strong><\/p>\n<p>Her consent form said she would not be contacted by the researchers. Consent forms are typically written this way because the purpose of such studies is not to provide medical care but to gain new insights. The researchers are not the patients\u2019 doctors.<\/p>\n<p><strong>But in this case, the researchers happened to know about the woman\u2019s plan, and they also knew that their study indicated that she did not have her family\u2019s breast cancer gene.<\/strong> They were horrified.<\/p>\n<p>\u201cWe couldn\u2019t sit back and let this woman have her healthy breasts cut off,\u201d said Barbara B. Biesecker, the director of the genetic counseling program at the National Human Genome Research Institute, part of the National Institutes of Health. After consulting the university\u2019s lawyer and &#8230;<img loading=\"lazy\" decoding=\"async\" src=\"http:\/\/feeds.feedburner.com\/~r\/GeneExpressionBlog\/~4\/q0GrQgD89G0\" height=\"1\" width=\"1\"\/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Interesting story in The New York Times, Genes Now Tell Doctors Secrets They Can\u2019t Utter:<br \/>\nOne of the first cases came a decade ago, just as the new age of genetics was beginning. A young woman with a strong family history of breast and ovarian cancer&#8230;<\/p>\n","protected":false},"author":12,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[82,481,525,360],"tags":[],"class_list":["post-73571","post","type-post","status-publish","format-standard","hentry","category-genomics","category-human-genetics","category-human-genomics","category-personal-genomics"],"_links":{"self":[{"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/posts\/73571","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/users\/12"}],"replies":[{"embeddable":true,"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/comments?post=73571"}],"version-history":[{"count":3,"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/posts\/73571\/revisions"}],"predecessor-version":[{"id":73640,"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/posts\/73571\/revisions\/73640"}],"wp:attachment":[{"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/media?parent=73571"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/categories?post=73571"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/tags?post=73571"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}