Plans in the US for the National Institutes of Health (NIH) to collect American’s health records as part of a study into autism have been branded as “outdated, medicalised thinking that risks further pathologising neurominority people”.
The Institute of Neurodiversity (ION), a charity headquartered in Switzerland with global outposts, also warned about the ethical approach to research taken by such a project.
Last week NIH director Jay Bhattacharya told a panel of experts the public health research agency will start collecting Americans’ private health records as part of health and human services secretary Robert F. Kennedy Jr.’s plan to find the cause of autism by the autumn.
The plans will draw on information from a range of private sources, including pharmacy chains, health organisations, claims and billing and wearable devices with health sensors, such as smartwatches.
‘Outdated thinking’
However, the project has drawn significant concern from representatives of the neurodiverse community.
In a statement sent to Health & Protection, the Institute of Neurodiversity said it believed any large-scale health data initiative, especially one focused on autism or other minority neurotypes, must be approached with “deep ethical consideration, transparency, and meaningful” involvement of neurominority individuals from the outset.
“The idea of collecting private health data to ‘find the cause of autism’ echoes outdated, medicalised thinking that risks further pathologising neurominority people. Autism is not a disease to be cured or a mystery to be solved, it is a natural and lifelong variation in human minds,” it continued.
“Framing it otherwise perpetuates stigma and undermines decades of work by autistic self-advocates and allies.”
The institute said that were a similar initiative were proposed in the UK, we believe it would be met with “rightful” concern from both privacy advocates and the neurodiversity community.
According to the institute, questions would be raised about:
- Consent: Who is giving it, and is it truly informed?
- Ownership and use of data: Will individuals have control over how their data is used?
- Purpose and framing: Is the aim to support neurominority people, or to “cure”, convert or prevent/eliminate neurominority births?
- Representation: Are autistic people involved in leading the design, governance, and review of such initiatives?
- Inclusion and support of neurominorities is not about collecting data on us it’s about co-creating systems with us.
It concluded: “We support ethical research that is co-designed with neurominorities, grounded in the social model of disability and focused on quality of life, access, and inclusion, not just biology.
“We invite any public health body or research initiative to partner with neurominority-led organisations and ensure the voices of those most affected are central, not peripheral, to every decision.”
Shocking and unnerving
Also responding to the development across the Atlantic, Kathryn Knowles, co-managing director at Cura Financial Services, who is autistic, said it was a chilling approach.
“This news is deeply shocking and unnerving. I do not live in the US, but even so, I feel like I might cry and there is a heavy kind of numbness too,” she told Health & Protection.
“I am sure that most people would not consent or be happy if they were being tracked.”
Knowles further maintained that the tracking of individuals had “no justification”.
“This is nothing to do with vaccines or environmental toxins, the science debunking these as contributors to autism is thorough,” she continued.
“I think many of us can guess as to the purpose of this and it is of course not positive.
“This is all about saying that there is something ‘wrong’ with autistic people that needs to be prevented.
“If you take away autism, you take away some of the greatest minds on the planet, and we would not be where we are today without autistic people who were able to process information differently to ‘normal’.”
Health & Protection contacted a number of insurers and brokers operating in the US market for their reaction to Kennedy’s plan, but none responded by press deadlines.