Email2Toot Psychology Bot<p>Email2Toot Robot. Please see entry below for author.<br> <br>RFK/NIH Autism research<br> <br>A Clinicians Exchange member asked:</p><p>"Hi all: Has anyone else been following this? I’m trying to sort through the ethics and legalities, but lack some knowledge about how this data might have been gathered in the past. Any thoughts?</p><p><a href="https://www.npr.org/2025/04/23/nx-s1-5372695/autism-nih-rfk-medical-records" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">npr.org/2025/04/23/nx-s1-53726</span><span class="invisible">95/autism-nih-rfk-medical-records</span></a>? "</p><p>To which I responded:</p><p>Yes, I have been following this.</p><p>I can't address your question about how data was gathered in the past. That said, I believe studies generally involve either informed consent or entirely anonymized large data sets. (See also Autism expert quotes in 2nd Guardian article below.)</p><p>This study (which is supposed to find the cause of Autism by September!) is pulling from "several different federal and commercial databases" and "NIH... [is] also discussing a potential expansion of the agency’s access to data from the Centers for Medicare and Medicaid Services... The study also plans to link medication records from pharmacies, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers." (Quoting from first Guardian article below).</p><p>So I think its fair to say there's little to no informed consent here, not counting the required 50 page EULAs people have to agree to for access to healthcare or to use their fitness trackers!</p><p>Going beyond just research, they are also keeping a registry of American with Autism! [So, no, not anonymous.]</p><p>"With this information being included in the database, the NIH is also reportedly crafting a new registry to track those with autism, per [CBS News.](<a href="https://www.cbsnews.com/news/rfk-jr-autism-study-medical-records/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">cbsnews.com/news/rfk-jr-autism</span><span class="invisible">-study-medical-records/</span></a>)" (Again 1st Guardian article below.)</p><p>This goes beyond Autism:</p><p>"Bhattacharya said that compiling this data could also potentially give health agencies a window into “real-time health monitoring” on Americans for studying other health problems beyond autism."</p><p>"'What we’re proposing is a transformative real-world data initiative, which aims to provide a robust and secure computational data platform for chronic disease and autism research,' he said." (1st Guardian Article below.)</p><p>The CBS News article below is worth viewing to see the graphic of just how comprehensive the NIH database will be and where all it is drawing from.</p><p>The 2nd Guardian article below should be read in its entirety (rather than me quoting 90% of it) as it goes into how its already known that 95% of Autism is related to genetics, how environmental factors are presupposed as a cause of Autism by Kennedy (including the vaccine for measles), and how the head of the study was found to be practicing medicine without a license in Maryland. Also how huge swaths of funding for existing Autism programs and the disabled are simultaneously being cut even as this study is launched to supposedly help those with Autism.</p><p>~~~</p><p>RFK Jr’s autism study collecting Americans’ private medical records<br><a href="https://www.theguardian.com/us-news/2025/apr/22/rfk-jr-autism-nih" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">theguardian.com/us-news/2025/a</span><span class="invisible">pr/22/rfk-jr-autism-nih</span></a></p><p>Autistic people and experts voice alarm at RFK’s ‘terrible’ approach to condition<br><a href="https://www.theguardian.com/us-news/2025/apr/24/rfk-jr-autism-disability-services-cuts" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">theguardian.com/us-news/2025/a</span><span class="invisible">pr/24/rfk-jr-autism-disability-services-cuts</span></a></p><p>RFK Jr.'s autism study to amass medical records of many Americans<br><a href="https://www.cbsnews.com/news/rfk-jr-autism-study-medical-records/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">cbsnews.com/news/rfk-jr-autism</span><span class="invisible">-study-medical-records/</span></a></p><p>-- Michael</p><p><a href="https://mastodon.clinicians-exchange.org/tags/autism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>autism</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/NIH" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NIH</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/registry" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>registry</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/PHI" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PHI</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/privacy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>privacy</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/medicalrecords" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medicalrecords</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/genetics" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>genetics</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/vaccines" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>vaccines</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/HHS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>HHS</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/RFK" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RFK</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/aspergers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>aspergers</span></a> <span class="h-card" translate="no"><a href="https://lemmy.world/c/autism" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>autism</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/autisticadvocacy" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>autisticadvocacy</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/psychology" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>psychology</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/psychiatry" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>psychiatry</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/psychtherapists" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>psychtherapists</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/socialwork" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>socialwork</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mentalhealth" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mentalhealth</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/psychotherapist" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>psychotherapist</span></a></span></p>