{"id":42543,"date":"2011-07-15T12:21:15","date_gmt":"2011-07-15T20:21:15","guid":{"rendered":"http:\/\/blogs.discovermagazine.com\/gnxp\/?p=12873"},"modified":"2011-07-15T12:21:15","modified_gmt":"2011-07-15T20:21:15","slug":"genetic-privacy-and-%e2%80%9cbig-brother%e2%80%9d","status":"publish","type":"post","link":"https:\/\/www.razib.com\/wordpress\/2011\/07\/15\/genetic-privacy-and-%e2%80%9cbig-brother%e2%80%9d\/","title":{"rendered":"Genetic privacy and \u201cBig Brother\u201d"},"content":{"rendered":"<p><a href=\"http:\/\/www.genomesunzipped.org\/2011\/07\/friday-links-peer-review-discussions-attacks-on-newborn-screening-and-google.php\">Several<\/a> <a href=\"http:\/\/twitter.com\/#!\/joe_pickrell\">people<\/a> have pointed me to <a href=\"http:\/\/marycarmichael.wordpress.com\/\">Mary Carmichael&#8217;s<\/a> piece for <em>Nature<\/em>, <a href=\"http:\/\/www.nature.com\/news\/2011\/110713\/full\/475156a.html?WT.mc_id=TWT_NatureNews\">Newborn screening: A spot of trouble<\/a>. It&#8217;s free, but you have to register. The subheading is: &#8220;By raising hell about newborn blood-spot screening, Twila Brase could jeopardize public-health programmes and derail research. The problem is, she has a point.&#8221;<\/p>\n<p>The broader issue is &#8220;genetic privacy,&#8221; and the nature of consent in our public health system. Here&#8217;s an interesting paragraph which gets to some of the things <a href=\"http:\/\/blogs.discovermagazine.com\/gnxp\/2011\/06\/genetics-existed-before-omics\/\">we&#8217;ve discussed here before<\/a>:<\/p>\n<blockquote>\n<p>Twila Brase was not always the kind of person who hands out politically charged propaganda in airports. On a first meeting at her modest office in a shopping plaza in St Paul, Minnesota, she seems more like the unassuming nurse she was back in 1995 \u2014 before she began her second life as a bioethical gadfly, and before she had started making YouTube videos that accuse her state of commandeering the DNA of children as &#8220;government property&#8221; through widespread newborn screening programmes. Her voice is quiet and level. It is difficult to write her off as a conspiracy theorist: she simply doesn&#8217;t sound like one, even when, 4.5 minutes into making the case against screening,<strong> she &#8230;<img loading=\"lazy\" decoding=\"async\" src=\"http:\/\/feeds.feedburner.com\/~r\/GeneExpressionBlog\/~4\/0zxUp9WlxnA\" height=\"1\" width=\"1\"\/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Several people have pointed me to Mary Carmichael&#8217;s piece for Nature, Newborn screening: A spot of trouble. It&#8217;s free, but you have to register. The subheading is: &#8220;By raising hell about newborn blood-spot screening, Twila Brase could&#8230;<\/p>\n","protected":false},"author":12,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4,82,360],"tags":[],"class_list":["post-42543","post","type-post","status-publish","format-standard","hentry","category-genetics","category-genomics","category-personal-genomics"],"_links":{"self":[{"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/posts\/42543","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=42543"}],"version-history":[{"count":6,"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/posts\/42543\/revisions"}],"predecessor-version":[{"id":42621,"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/posts\/42543\/revisions\/42621"}],"wp:attachment":[{"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/media?parent=42543"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/categories?post=42543"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.razib.com\/wordpress\/wp-json\/wp\/v2\/tags?post=42543"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}