{"id":60917,"date":"2025-04-26T22:46:47","date_gmt":"2025-04-27T03:46:47","guid":{"rendered":"https:\/\/fourthamendment.com\/?p=60917"},"modified":"2025-04-26T22:46:47","modified_gmt":"2025-04-27T03:46:47","slug":"wapo-u-s-autism-data-project-sparks-uproar-over-ethics-privacy-and-intent","status":"publish","type":"post","link":"http:\/\/fourthamendment.com\/?p=60917","title":{"rendered":"WaPo: U.S. autism data project sparks uproar over ethics, privacy and intent"},"content":{"rendered":"\n<p>WaPo: <a href=\"https:\/\/www.washingtonpost.com\/health\/2025\/04\/25\/autism-registry-privacy-rfk-research\/\">U.S. autism data project sparks uproar over ethics, privacy and intent<\/a> by Ariana Eunjung Cha, Caitlin Gilbert and Fenit Nirappil (\u201cAdministration health officials walked back a plan to register people with autism after criticism from scientists, privacy experts and advocates for people with autism.\u201d [It worked so well for the <a href=\"https:\/\/www.jstor.org\/stable\/20101302\">Nazis in Germany<\/a>.]):<\/p>\n\n\n\n<!--more-->\n\n\n\n<p>The Trump administration has retreated from a controversial plan for a national registry of people with autism just days after announcing it as part of a new health initiative that would link personal medical records to information from pharmacies and smartwatches.<\/p>\n\n\n\n<p>Jay Bhattacharya, director of the National Institutes of Health, unveiled the broad, data-driven initiative to a panel of experts Tuesday, saying it would include \u201cnational disease registries, including a new one for autism\u201d that would accelerate research into the rapid rise in diagnoses of the condition.<\/p>\n\n\n\n<p>The announcement sparked backlash in subsequent days over potential privacy violations, lack of consent and the risk of long-term misuse of sensitive data.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>WaPo: U.S. autism data project sparks uproar over ethics, privacy and intent by Ariana Eunjung Cha, Caitlin Gilbert and Fenit Nirappil (\u201cAdministration health officials walked back a plan to register people with autism after criticism from scientists, privacy experts and &hellip; <a class=\"more-link\" href=\"http:\/\/fourthamendment.com\/?p=60917\">Continue reading <span class=\"meta-nav\">&rarr;<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[42],"tags":[],"class_list":["post-60917","post","type-post","status-publish","format-standard","hentry","category-informational-privacy"],"_links":{"self":[{"href":"http:\/\/fourthamendment.com\/index.php?rest_route=\/wp\/v2\/posts\/60917","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/fourthamendment.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/fourthamendment.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/fourthamendment.com\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"http:\/\/fourthamendment.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=60917"}],"version-history":[{"count":1,"href":"http:\/\/fourthamendment.com\/index.php?rest_route=\/wp\/v2\/posts\/60917\/revisions"}],"predecessor-version":[{"id":60918,"href":"http:\/\/fourthamendment.com\/index.php?rest_route=\/wp\/v2\/posts\/60917\/revisions\/60918"}],"wp:attachment":[{"href":"http:\/\/fourthamendment.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=60917"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/fourthamendment.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=60917"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/fourthamendment.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=60917"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}