{"id":983,"date":"2019-02-27T15:21:00","date_gmt":"2019-02-27T15:21:00","guid":{"rendered":"https:\/\/nclnet.org\/familytree_dna\/"},"modified":"2021-02-24T13:41:41","modified_gmt":"2021-02-24T13:41:41","slug":"familytree_dna","status":"publish","type":"post","link":"https:\/\/nclnet.org\/familytree_dna\/","title":{"rendered":"NCL calls for investigation of direct-to-consumer genetic testing industry in the wake of FamilyTreeDNA revelations"},"content":{"rendered":"<p><!-- content_before_flip_start --><\/p>\n<p>February 27, 2019<\/p>\n<p><!-- content_before_flip_end --><\/p>\n<p>Media contact: National Consumers League \u2013 Carol McKay, carolm@nclnet.org, (412) 945-3242\u00a0or Taun Sterling, tauns@nclnet.org, (202)\u00a0207-2832<\/p>\n<p>Washington, DC \u2013\u00a0<a href=\"https:\/\/www.buzzfeednews.com\/article\/salvadorhernandez\/family-tree-dna-fbi-investigative-genealogy-privacy\">Reports<\/a>\u00a0that DNA testing services like\u00a0FamilyTreeDNA\u00a0are sharing genetic data with law enforcement agencies should prompt regulators and Congress to consider new rules to protect consumers from abuses by the direct-to-consumer (DTC) DNA testing industry, said the National Consumers League (NCL) today. The reports about\u00a0FamilyTreeDNA\u00a0come on the heels of other revelations about\u00a0<a href=\"https:\/\/www.theverge.com\/2018\/6\/5\/17430146\/dna-myheritage-ancestry-accounts-compromised-hack-breach\">lax data security<\/a>\u00a0and the\u00a0<a href=\"https:\/\/www.consumerreports.org\/genetic-testing\/at-home-genetic-test-kits-what-you-need-to-know\/\">potential for misinformation<\/a>\u00a0stemming from consumers\u2019 use of DTC genetic testing kits.<\/p>\n<p>\u201cOur genetic information is literally the code for who we are,\u201d said NCL Executive Director Sally Greenberg. \u201cThe value of genetic data to law enforcement must be weighed against the significant potential for harm from misuse of such data. Our DNA data is tremendously sensitive,\u00a0and extreme care must be taken to ensure that it is not used\u00a0in unexpected ways or, even worse, misused to harm consumers. Unfortunately, the DTC genetic testing industry has exploded without effective oversight, leaving consumers at the mercy of companies whose primary goal may be monetizing this valuable data, not respecting their users\u2019 privacy.\u201d<\/p>\n<p>Specifically, NCL urges policymakers to take common-sense steps to better protect consumers\u2019 genetic data, including:<\/p>\n<ul>\n<li>The Federal Trade Commission should immediately broaden its\u00a0<a href=\"https:\/\/www.fastcompany.com\/40580364\/the-ftc-is-investigating-dna-firms-like-23andme-and-ancestry-over-privacy\">existing investigations<\/a>\u00a0of DTC DNA testing services to determine whether\u00a0FamilyTreeDNA\u00a0and similar services have engaged in unfair or deceptive trade practices by sharing genetic data with law enforcement without adequate notice and consent by users;<\/li>\n<li>DTC DNA testing websites should collectively pledge to obtain affirmative opt-in consent from current and new users prior to allowing law enforcement agencies access to users\u2019 genetic data without appropriate legal process; and<\/li>\n<li>Congress should convene hearings to examine how widespread abuses of consumer privacy by the DTC DNA testing industry are and what, if any, new consumer protection regulations are needed to address the potential for consumer harm in this rapidly growing industry.<\/li>\n<\/ul>\n<p>For more information about the National Consumers League&#8217;s work on privacy issues and data security, visit\u00a0<a href=\"https:\/\/fraud.org\/data-breach-epidemic\/\" target=\"_blank\" rel=\"noopener\">https:\/\/fraud.org\/data-breach-epidemic\/<\/a>.<\/p>\n<p><strong>About the National Consumers League<\/strong><\/p>\n<p>The National Consumers League, founded in 1899, is America&#8217;s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit <a href=\"https:\/\/nclnet.org\/\" target=\"_blank\" rel=\"noopener\">www.nclnet.org<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>February 27, 2019 Media contact: National Consumers League \u2013 Carol McKay, carolm@nclnet.org, (412) 945-3242\u00a0or Taun Sterling, tauns@nclnet.org, (202)\u00a0207-2832 Washington, DC \u2013\u00a0Reports\u00a0that DNA testing services like\u00a0FamilyTreeDNA\u00a0are sharing genetic data with law [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"0","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false},"categories":[25],"tags":[412],"acf":[],"_links":{"self":[{"href":"https:\/\/nclnet.org\/wp-json\/wp\/v2\/posts\/983"}],"collection":[{"href":"https:\/\/nclnet.org\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/nclnet.org\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/nclnet.org\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/nclnet.org\/wp-json\/wp\/v2\/comments?post=983"}],"version-history":[{"count":5,"href":"https:\/\/nclnet.org\/wp-json\/wp\/v2\/posts\/983\/revisions"}],"predecessor-version":[{"id":17204,"href":"https:\/\/nclnet.org\/wp-json\/wp\/v2\/posts\/983\/revisions\/17204"}],"wp:attachment":[{"href":"https:\/\/nclnet.org\/wp-json\/wp\/v2\/media?parent=983"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/nclnet.org\/wp-json\/wp\/v2\/categories?post=983"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/nclnet.org\/wp-json\/wp\/v2\/tags?post=983"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}