红杏视频

WASHINGTON 鈥� The 红杏视频, the Autistic Self Advocacy Network (ASAN), and 80 other disability rights, civil rights, and public health organizations sent a letter to Secretary of Health and Human Services Robert F. Kennedy, Jr. today raising significant concerns with the National Institutes of Health鈥檚 (NIH) proposal to create a national autism 鈥渞egistry.鈥� The registry was detailed during an April 21 presentation by NIH Director Jay Bhattacharya, which he described as a 鈥渞eal-world data platform鈥� for 鈥渄eveloping national disease registries, including a new one for autism.鈥� The Department of Health and Human Services (HHS) has since claimed it is not creating an 鈥渁utism registry,鈥� but the department has failed to engage with autistic people and advocates, exacerbating the lack of clarity. 鈥淚nstead of engaging with the communities this proposal would impact most, federal health agencies have taken every opportunity to shut disabled and autistic people out of the conversation, leaving unanswered questions, a sense of alarm, and deepening mistrust,鈥� said Vania Leveille, 红杏视频 senior legislative counsel. 鈥淭rust in federal health data requires affirmative, good faith engagement with autistic people, appropriate safeguards for privacy, and ensuring any proposal helps 鈥� not hurts 鈥� the communities impacted.鈥� The letter outlines the many unanswered questions left by NIH鈥檚 data platform proposal, including what data it will collect, what sources it will rely on, how it will anonymize and secure the data. It also highlights the increased risk of surveillance, stigmatization, and marginalization from data collection, particularly for disabled people 鈥� who have a long and troubled history with government efforts to find and track disability for the purpose of eliminating it. 鈥淚t鈥檚 no secret that this proposal has created a lot of fear and confusion in the autistic community.鈥� said Colin Killick, executive director of the Autistic Self Advocacy Network. 鈥淲e continue to advocate and support research into autism that autistic people want conducted, but it is critical that autistic people鈥檚 private data not be shared without our consent. We hope the administration answers our questions to shine light on how autistic people and our rights will be protected.鈥� The letter also establishes three key steps NIH and HHS must take to establish trust in its proposed data platform: Meaningful communication with autistic people and advocates; fundamental privacy safeguards to prevent misuse and abuse; and ensuring the data platform advances the well-being of autistic people, people with disabilities, and the public health while minimizing potential harms. The letter is here: /documents/letter-to-hhs-secretary-robert-f-kennedy-jr-on-concerns-with-proposed-autism-registry