Robert F Kennedy Jr, the health secretary, has announced the launch of a new study aimed at creating a comprehensive national autism database. During a cabinet meeting last week, he gave an impassioned discourse on his vision for this partnership. He plans to gather information from multiple sources to allow for what he describes as “real-time health monitoring.” Kennedy was hopeful about the project’s relatively short timeline, predicting results back within a few months.
Kennedy’s announcement made waves, drawing immediate concern and attention over the potential privacy and ethical implications. He underscored that the goal of this study is to help better understand autism and produce better health outcomes. Yet, desde entonces, critics have raised alarms over how this data could potentially be misused.
By September, we’ll know some of the first answers. Then, within six months of that, we’ll have some answers—real, definitive answers, Kennedy stated.
Yet, it’s the scale of the initiative and its controversial nature that has drawn national attention. As an illustration of his enthusiasm for the project, director of the National Institutes of Health (NIH), Jay Bhattacharya suggested third-party collection of data from pharmacy and chain store retail outlets, health organizations, insurance claims, and wearables. Though well-placed to unite these intentions, privacy advocates are quick to point out that the use of private datasets comes with serious concerns.
Typically, such studies trigger apprehensions among stakeholders. Diana Schendel, a research professor at the AJ Drexel Autism Institute at Drexel University, pointed to a major problem. Millions of Americans have the same privacy and data security concerns.
“The companies, I would imagine, would be very concerned, because they’re responsible for the privacy of that information,” Schendel remarked. She cautioned that this heavy-handed approach might intimidate the public and dissuade them from engaging in research. Most fear how their data might be used against them.
Significant opposition to the registry has developed from just about every quarter, including parents and autism professionals. Amy Marschall, an autistic psychologist, is an ardent opponent of mandatory autism registries. Her concerns echoed the fears of many about what this program could lead to.
“Are you going to use this as an excuse to take away my rights, to hold me against my will, to prevent me from having children, to take away my right to manage my own finances?” asked Marschall.
Ryan Smith, a parent of two neurodiverse children, has been especially outspoken on his opposition to the proposed neurodiversity database. He initiated a petition against the registry that quickly gained traction, amassing nearly 50,000 signatures before he declared victory when the Department of Health and Human Services (HHS) appeared to reconsider its stance on the plan.
“At worst,” said Smith, “I fear that we’re heading down a path towards eugenics. As a parent of a daughter with autism, he worries the database will increase stigma associated with autism and prevent families from pursuing diagnoses and care their children require.
I think that, like, my mind almost instantly goes to history and things that happened in Nazi Germany, Smith continued. “That’s extreme, but it feels like a possibility.”
The petition’s shotgun pace mirrors the strong public passion that exists on both sides of this hot button issue. It did — it went from 2,500 to almost 35,000 signatures in less than a day. His lament is echoed by many worried advocates today. They are concerned that gathering sensitive data would serve to further marginalize autistic people.
Marschall expressed similar sentiments. He has a strong conviction about the importance of research to improve lives, but that research needs to include input and actions from those most directly affected by autism.
Nobody is saying: ‘Don’t research us.’ Nobody is saying: ‘Don’t find ways to make our lives better.’ It’s: ‘Don’t research us without any of us on your research team – and find ways to support us, not ways to eradicate us,’ she emphasized.
Schendel further pointed out that combining multiple datasets into one cannot produce actionable insights in a timely manner. “The idea that you can take a lot of different datasets and pool them together into a single dataset and perform an analysis with any kind of meaningful answer in a very short period of time is naive,” she stated.
Though facing pushback from all around, Kennedy is unwavering in his dedication to the study’s goals. His goal is to fill critical gaps in our knowledge about autism while protecting the safety and welfare of research participants and ensuring ethical standards are met. The next few months will prove crucial, as stakeholders on all sides look forward to seeing the touted outcomes from this ambitious initiative.
