AuSM Comments on Proposed Federal Autism Registry

The Autism Society of Minnesota (AuSM) is deeply concerned over the recent announcement by Health and Human Services Secretary Robert F. Kennedy Jr. regarding the creation of a federal autism registry. While we strongly support rigorous, ethical, and science-based research to better understand autism, the methods proposed in this initiative raise serious ethical, legal, and practical concerns that cannot be ignored.

According to public reports, the National Institutes of Health (NIH) plans to collect and compile identifiable health data from a wide range of private and public sources, including hospitals, pharmacies, and personal health devices such as smartwatches. However, the lack of transparency about how this registry would function raises alarm. Key questions remain unanswered: How will autistic individuals be identified? Will their data be de-identified? What confidentiality protections will be in place? Will individuals receive any notification or have an opportunity to opt out? Without clear answers to these foundational questions, the risk for misuse of personal information is high.

Informed Consent and Ethical Oversight

One of our most pressing concerns is the absence of informed consent in this data collection effort. Unlike existing research initiatives such as the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network, which uses de-identified data and is subject to rigorous Institutional Review Board (IRB) oversight, this proposed registry appears to involve identifiable, personal health information gathered without direct consent. The dismantling of the Office for Human Research Protections (OHRP), which previously upheld ethical standards for human subjects research, only heightens the risk that this initiative could move forward without adequate accountability or oversight.

Research involving vulnerable populations—including autistic individuals, children, and adults under guardianship—demands the highest ethical standards. Collecting extensive personal data from individuals without directly seeking their consent, and without clear parameters on who can access this information and how it will be used, presents an alarming ethical dilemma. For many in our community, this kind of surveillance is reminiscent of past harms against disabled people, and it risks creating further isolation and distrust, and could meaningfully drive people away from the formal diagnosis and service supports they need.

Privacy and Public Trust

While the Health Insurance Portability and Accountability Act (HIPAA) provides important protections for medical privacy, its scope is limited. HIPAA applies to government agencies only when they act as “covered entities,” such as providing healthcare services, administering health plans like Medicare or Medicaid, or transmitting electronic health information. However, not all government agencies fall under these definitions—agencies that do not directly deliver healthcare or manage health plans, such as those administering social security or welfare benefits, are not subject to HIPAA requirements. This leaves significant gaps in privacy protections, especially in large-scale data collection initiatives like the proposed federal autism registry. Americans also have a constitutional right to privacy, and any collection of identifiable health information by the government must be weighed carefully against that right.

Our community has made clear that privacy matters. Many autistic individuals choose not to disclose their diagnosis publicly out of concern for stigma, discrimination, and surveillance. A federal registry—particularly one collecting identifiable data from multiple sources—will undoubtedly deter some individuals and families from seeking diagnosis or support, out of fear of being tracked or profiled. This outcome is directly at odds with long-standing advocacy efforts encouraging earlier identification, greater acceptance, and access to services.

Science Must Center Autistic Voices

We are especially troubled by the framing of this initiative as a search for a “cause and cure” for autism. Statements like these contribute to harmful narratives suggesting that autism is a problem to be solved, rather than a natural variation in human neurodiversity. Many autistic people do not want to be “cured”—they want to be understood, accepted, and supported. Though we welcome investments in better supporting all autistic individuals, especially and including those with the highest support needs, the message that autism must be eradicated is deeply hurtful and contributes to a broader pattern of dehumanization and pathologization. Any research or policy initiative must reflect the full spectrum of autistic experience, and must be shaped with the autistic community, not simply about them.

A Call for Responsible Research

We urge the NIH and HHS to redirect resources toward ethical, community-engaged research that advances the health, well-being, and quality of life of autistic people. This means:

• Ensuring any data collection is grounded in transparency, consent, and privacy protections.
• Prioritizing funding for researchers who have demonstrated a commitment to ethical standards and community collaboration.
• Including autistic people in all stages of research design and decision-making.
• Investing in services, supports, and infrastructure that meet the real, stated needs of autistic individuals and families.

In closing, we emphasize the principle: nothing about us without us. Any initiative of this magnitude must begin with respectful, inclusive dialogue with the very people it intends to impact.

We all share the goal of improving the lives of autistic people—but the path forward must be one of trust, ethics, and equity.