Health
•
HHS Denies Plans for Autism Registry After Backlash
## HHS Denies Plans for Autism Registry Amidst Backlash and Privacy Concerns
The U.S. Department of Health and Human Services (HHS) has denied plans to create a national autism registry, following a backlash from autism advocacy groups and concerns over data privacy. The denial comes after NIH Director Dr. Jay Bhattacharya, in an April 21 presentation, outlined an initiative to create a "real-world data platform" that could include "national disease registries," including one for autism. This platform would consolidate data from various sources, including federal agencies, private sector entities (like pharmacy chains), electronic health records, and even data from wearable devices. Dr. Bhattacharya stated the platform would accelerate autism research and aid in drug development while preserving patient privacy.
However, the announcement sparked immediate concern. The Autism Science Foundation voiced worries about the lack of clarity regarding data collection, sharing, and maintenance, citing these ambiguities as "red flags." The Autistic Self Advocacy Network (ASAN) expressed even stronger reservations, citing HHS Secretary Robert F. Kennedy Jr.'s past statements and actions. ASAN highlighted Kennedy's controversial remarks devaluing the lives of autistic individuals, and pointed to his appointment of David Geier, who has faced fines for practicing medicine without a license and conducting unethical research, as further cause for alarm.
ASAN's statement underscored the potential for misuse of sensitive medical data, highlighting the risk of autistic individuals becoming targets of scams or facing discrimination. They stressed that any research involving personally identifiable information (PII) must be conducted with explicit, informed consent, echoing concerns about a lack of transparency regarding data collection and use in this proposed initiative. The organization emphasized the importance of robust consent processes, similar to those employed in the long-running Framingham Heart Study, as a safeguard against potential harm.
While HHS denies creating an autism registry, it maintains its commitment to the real-world data platform to support autism research, allocating $50 million to this endeavor. The lack of specific details regarding data privacy protocols and the potential use of PII remains a point of contention, prompting continued calls for greater transparency and safeguards from autism advocacy groups. The controversy underscores the ongoing tension between advancing scientific research and protecting the privacy and rights of vulnerable populations. The debate is further complicated by past instances of unethical research and the historical context of eugenics in the treatment of people with disabilities. The HHS commitment to a research platform without a registry remains under scrutiny.
The U.S. Department of Health and Human Services (HHS) has denied plans to create a national autism registry, following a backlash from autism advocacy groups and concerns over data privacy. The denial comes after NIH Director Dr. Jay Bhattacharya, in an April 21 presentation, outlined an initiative to create a "real-world data platform" that could include "national disease registries," including one for autism. This platform would consolidate data from various sources, including federal agencies, private sector entities (like pharmacy chains), electronic health records, and even data from wearable devices. Dr. Bhattacharya stated the platform would accelerate autism research and aid in drug development while preserving patient privacy.
However, the announcement sparked immediate concern. The Autism Science Foundation voiced worries about the lack of clarity regarding data collection, sharing, and maintenance, citing these ambiguities as "red flags." The Autistic Self Advocacy Network (ASAN) expressed even stronger reservations, citing HHS Secretary Robert F. Kennedy Jr.'s past statements and actions. ASAN highlighted Kennedy's controversial remarks devaluing the lives of autistic individuals, and pointed to his appointment of David Geier, who has faced fines for practicing medicine without a license and conducting unethical research, as further cause for alarm.
ASAN's statement underscored the potential for misuse of sensitive medical data, highlighting the risk of autistic individuals becoming targets of scams or facing discrimination. They stressed that any research involving personally identifiable information (PII) must be conducted with explicit, informed consent, echoing concerns about a lack of transparency regarding data collection and use in this proposed initiative. The organization emphasized the importance of robust consent processes, similar to those employed in the long-running Framingham Heart Study, as a safeguard against potential harm.
While HHS denies creating an autism registry, it maintains its commitment to the real-world data platform to support autism research, allocating $50 million to this endeavor. The lack of specific details regarding data privacy protocols and the potential use of PII remains a point of contention, prompting continued calls for greater transparency and safeguards from autism advocacy groups. The controversy underscores the ongoing tension between advancing scientific research and protecting the privacy and rights of vulnerable populations. The debate is further complicated by past instances of unethical research and the historical context of eugenics in the treatment of people with disabilities. The HHS commitment to a research platform without a registry remains under scrutiny.
