My friend Peggy Mason, a neurobiologist colleague here at Chicago, received the NIH’s email below, which was sent around to many people who get NIH announcements. This announcement is soliciting people to review grants on autism, and it has some pretty strange bits. I thought I’d let readers see it and give their take. At the end I have a list of questions that struck me as I read it.
Peggy had no problem with me using her name, as she was also puzzled by the announcement. It’s indented below. Bolding is both mine and the NIH’s; I’ve indicated which is which.
From: Ascanio Carrera, Emilia (NIH/OD) [C] <emilia.ascaniocarrera@nih.gov>
Sent: Monday, June 30, 2025 9:28 AM
To: Ascanio Carrera, Emilia (NIH/OD) [C] <emilia.ascaniocarrera@nih.gov>
Cc: Faulk, Kristina (NIH/OD) [E] <kristina.faulk@nih.gov>; Kellton, Karen (NIH/OD) [E] <karen.kellton@nih.gov>
Subject: The NIH Autism Data Science Initiative (ADSI) Review Recruitment
Hello,
The NIH Autism Data Science Initiative (ADSI) is seeking reviewers with scientific expertise, including those with lived experience, to review applications to be selected for funding under the Autism Data Science Initiative (OTA-25-006) research opportunity announcement.
The Autism Data Science Initiative’s goals are to explore novel contributors to autism, improve our understanding of mechanisms of co-occurring conditions to target in future clinical trials, and enhance our ability to deploy effective and scalable interventions and services across the lifespan through identification of effective components of care.
The application deadline is Friday, June 27th, and we are now looking for reviewers with scientific expertise in the following areas:
- Community engaged research methods and/or lived experience
- Data science, bioinformatics, and/or Multi-omics integration
- Expertise with Electronic Health Records and Claims data and research methods
- Autism etiology (e.g., genetics, cellular/molecular mechanisms)
- Clinical diagnosis of autism, phenotyping, and diagnostic ascertainment procedures
- Co-occurring conditions and health outcomes in autism across the lifespan, including mental health, quality of life, educational and employment outcomes
- Autism interventions and services, including clinical trial methodology (i.e., efficacy, effectiveness, hybrid-type trials), dissemination and implementation research
- Toxicology and/or Epidemiology (e.g., environmental, maternal and child health)
- Proteomics, Metabolomics and/or Epigenomics (e.g., methylation, transcriptomics)
- Reproducibility and/or validation design and research
Please note that reviewers should have sufficient work experience and/or education in their area(s) of expertise. Early career investigator are welcome and encouraged to participate as a reviewer.
JAC: All bolding above is mine, while all bolding below is the NIH’s:
Reviewers will complete a required conflict of interest process prior to being assigned applications to review. We plan to assign these applications by Wednesday, July 9th and will offer a Webinar with explicit instructions on the Objective Review process. Written Objective Review evaluations will be due on Wednesday, July 23rd. Each reviewer will be assigned no more than 5 applications to review. If you are interested in reviewing but have time constraints during the July 9-July 23 review process, please comment on this within the webform (see hyperlink below). All review materials will be accessed via MS Teams or NIH Box.
If you are willing to serve as a reviewer, please complete the Reviewer Intake webform by June 30th. Please note, your information will not be publicly available and will only be shared with the immediate ADSI team. If you are not able to participate, then please respond using “reply all” so that we know to remove you from future correspondence seeking reviewers.
Please feel free to forward this email to anyone meeting the above scientific expertise qualifications that you think may be interested. Please contact Kristina Faulk (adsi-review@mail.nih.gov) if you have any questions or concerns.
Please note, there is a reviewer orientation video that will be made available on Tuesday, July 1st, 2025. If you volunteer, we will confirm receipt of your email and include a link to the reviewer orientation video.
Sincerely,
The ADSI Working Group
What is weird about this announcement includes the following:
1.) It invites people to nominate themselves to review grants (on autism)
2.) “Lived experience”, a phase often encountered in woke prose, can qualify you to be a reviewer.
3.) You do not necessarily have to possess an academic degree in the field to qualify as a reviewer. I’m not sure whether this invitation thus includes people who worked with autistic people, high-functioning autistic people themselves, parents of autistics, or anybody connected with the condition. This is the first time in my career that I have seen not only people asked to nominate themselves as reviewers of several grants on a subject, but also the apparent substitution of work experience (which would be “lived experience”) for of academic work or degrees (“education” does count, though). Is this type of self-nomination, particularly without academic qualifications, also used by other organizations that hand out grants?
4.) It struck me that although the “lived experience” thing seems woke, the whole solicitation might be a way to get autism activists onto NIH panels, which is something that Robert F. Kennedy Jr., the new United States Secretary of Health and Human Services, might want. As we know, RFK, Jr. has promoted the idea (rejected by most experts) that there is a connection between vaccines and autism, with one culprit being the mercury compound thimerosal. There are a lot of people who go along with this theory, and perhaps RFK, Jr. wants them to review (and perhaps fund) grants that could buttress the theory.
The last question is just speculation and a hypothesis that prompted Peggy to send me this solicitation. It certainly is outside the parameters of normal reviewing, what with the calls for reviewers, the us of “lived experience” as a qualification, the process of self-nomination, and the apparent lack of need for an academic degree in a field to review proposals in that field. I did genetics reviews for the NIH (all evolutionary genetics, my field), and I don’t remember any panels containing people with just “lived experience” in that field. But of course autism is a biomedical field very different from evolutionary genetics.
At any rate, both Peggy and I would appreciate readers weighing in on this. Is this a very abnormal way to get reviewers? And do you think this is a tactic to further RFK Jr.’s autism ideas? As an April article from the BBC reports, RFK, Jr. is on the fast track to find the cause of autism, a goal which seems bizarrely rushed:
US Health Secretary Robert F Kennedy Jr has pledged “a massive testing and research effort” to determine the cause of autism in five months.
Experts cautioned that finding the causes of autism spectrum disorder – a complex syndrome that has been studied for decades – will not be straightforward, and called the effort misguided and unrealistic.
Kennedy, who has promoted debunked theories suggesting autism is linked to vaccines, said during a cabinet meeting on Thursday that a US research effort will “involve hundreds of scientists from around the world.”
“By September, we will know what has caused the autism epidemic and we’ll be able to eliminate those exposures,” Kennedy said.
I have subscribed to your blog for many years. When I changed computers, I no longer received your emails for the blog. I subscribed with my email address, Rscupin@lindenwood.edu several times, but still didn’t receive emails with the blog. I have to go to the website weekly to see what I missed. Please help me receive the emails with the blog everyday. I miss your important thoughts.
Sadly, I can’t resubscribe any people; it’s out of my hands. I suggest, though, that you simply resubscribe with a different email address or even a fake email address. And you might use another name if that doesn’t work, either. Sorry about my impotence on this issue.
And maybe have that email forward messages to your preferred email.
It is indeed plausible that this is a smoke signal that the current Secretary of Health and Human Services intends to load autism research review panels with vaccine skeptics. His form of evil knows no bounds. The letter just has to go out to activists who have those reputations, and the boxes are checked and the job is done.
But how can that steer researchers into playing along? If this was about giving research grants to creationists and ID-ers, grants funded by taxpayers could be sent to facilities like the The Institute for Creation Research, or to the few ID-ers who are academics like Michael Behe. But are there equivalent things in the anti-vax crowd? I don’t know.
That was my immediate reaction too!
I don’t have any experience with NIH. But other American and Canadian grants programs do solicit reviewers in advance, sometimes directly by email to individual researchers (e.g., folks who were previously funded by the program) or by social media links to a web site.
I looked at the Reviewer Intake webform. It seems innocuous and asks for contact information but doesn’t ask for demographic data (e.g., gender identity) which is common to do in these settings. The only red flag is under 7. Areas of expertise where the first checkbox is “Community engaged research methods and/or lived experience”.
Agree it could be a way to get vaccine skeptics onto review panels. I thought another possibility is that it’s a way to get people with autism onto review panels. “Nothing about us without us.” May be good to do, but only people with the mildest forms of autism would be able to access the webform and participate in the grant review process. The “lived experience” of severely disabled autistic people would not be represented. This is what Freddie de Boer calls the gentrification of disability.
Some funding agencies – DOD for example – include what they somewhat disturbingly refer to as “consumer reviewers” on each panel. These are people with direct experience of the disease under review (prostate cancer survivors on a prostate cancer panel for example). However the recruitment of these individuals and the role that they play is very distinct from the scientific reviewers, who are recruited by the panel SROs based on expertise and/or recommendations (“if you can’t do this please tell me who you can recommend”). This particular call is certainly not what I’ve seen before from NIH or anyone else.
I expect the most dissatisfied consumers of DOD services would be the severely wounded and the relatives of fatalities.
Thimerosal was taken out of childhood vaccines years ago, but ASD diagnoses continued to rise. I have no idea why this would be an issue at this time.
It’s not uncommon at the NIH to have people affected with the medical problem to be involved in the studies and the council (second level of review) almost always includes people from the community, especially if they have the medical problem.
True enough, although it is still present in the US in a limited # of vaccines such as in multi-dose vials of influenza vaccine. The preservative is also still present in some vaccines used in developing countries.
Yes, it is an unusual way to get reviewers. It seems designed specifically to attract people from OUTSIDE the relevant biomedical and public health research community. When called on in the past by NIH to carry out site visits and review programs, THEY selected ME; I did not select myself.
Exactly.
“It struck me that although the “lived experience” thing seems woke, the whole solicitation might be a way to get autism activists onto NIH panels, which is something that Robert F. Kennedy Jr., the new United States Secretary of Health and Human Services, might want.”
That was the first thing I thought while I was reading this crazy development. Yikes.
My first thought was that it was a way to get “vaccine skeptics” off the NIH panels, but I know nothing about the grant process.
It seems unusual*, and “lived experience” is a trigger word for me. One could infer that this is a way for Secretary Kennedy to bring activists into the reviewing process. But it may also be an honest attempt to open the review process to a wider range of participants in his effort to pursue the goal of understanding the root causes of autism, implying of course that research so far has not been up to the task. I am reluctant to accept that he’s doing this to inject pseudoscience into autism research, but of course I don’t know.
What these oddities in the review process might bring is unclear, and I think we’ll just have to wait and see if the new guidelines have any material impact on grant funding. (I wonder if the NIH is planning to measure the results of these changes.)
*I have not reviewed an NSF proposal since 1995, and I have never reviewed an NIH proposal.
Sure sounds like a Brainworm Bobby scheme to get the “scientific” results he wants.
Well put. Succinct. Unfortunately probably correct
Woke Right tripwire activated – “lived experience” is 100% guaranteed loophole for fraud and abuse.
Think about it – if the study was blood groups, and those with lived blood group experience could get funding.
“It sounds as if he already knows the answer (“exposures”), and, at any rate, no, he won’t know what caused the rise in diagnoses of autism within three months.”
Yes, it will be interesting to see how these “exposures” somehow explain the 4:1 male/female rates of autism.
There are handy and easy-to-understand graphs of the recent rates of measles in the US. I chose one here: https://www.businessinsider.com/charts-show-measles-spreading-in-us-states-2025-4
Given the majority of areas that were specified, I would find it hard for a lay individual to be qualified in the areas either as a grant recipient or reviewer. I have seen panels from various national academies that requested people with lived experiences for discussion purposes, but not for research. In my case, I could qualify in several of the areas indicated but also have a grown daughter who is a high-functioning autistic individual, so I also qualify for the lived experience category. I don’t consider it a “woke” term in this request. If they had used “neurodivergent,” I would have considered it wokeness.
In the Irish system, the Health Research Board (similar agency to NIH albeit on a much smaller scale) actively includes the public and patient groups in the design and assessment of research programmes. There is a pool of people that can be called upon to comment on proposals in terms of the impact. However, they cannot score proposals nor comment on the scientific excellence as this is left to international peer reviewers (many from the US).
This is considered an important aspect of the research process in health. Of course, activists may get involved but they will not hold sway on actual evaluation decisions.
I think that it is important to have patients/public involved in the process, however, there must be clear boundaries set as to their role and they should certainly not be in a position to make actual funding (or rejection) decisions.
Thanks for the info on how the Irish system works. To be clear, NIH reviewers at the Review Cmte level comment and score application but do NOT “make actual funding decisions.” For some applications, they make what is essentially a rejection decision by triaging – all (3) reviewers recommend “not discussing” an application means it is undiscussed and thus not funded. Funding decisions happen at the Council level I believe.
Hi Peggy,
Good point and I should have clarified that the peer reviewers submit a ranked list of proposals for funding, reserve and rejection. It is the HRB Board that signs off on the actual funding
Conor
I think it is possible to overthink the implications of this NIH review recruitment
message. It might just be a step in the direction of community involvement, in the manner of the Irish Health Research Board—not a bad thing. As for the use of the
tautological cliché “lived experience”, some of these idiotic phrases get adopted by
bureaucrats out of sheer mimicry, without any particular agenda.
As a usual NIH reviewer that often reviews autism proposals this is most unusual (I also got the invite). The most unusual part is that in the form to sign up to potentially be a reviewer, it is specifically stated that all reviewers will remain anonymous and not posted in the federal registry. For the record, the list of reviewers for all NIH grant review panels is always public. This is so you can check if they have expertise or not. Inviting anyone to review without posting who reviews is a sure way to get quacks with no expertise to recommend how NIH will spend thousands of dollars. In addition everything will be handled outside ERA commons (the traditional NIH review system) is some sort of NIH Box. Last, I can tell you that several organizations linked to autism conspiracy theories have indeed submitted applications for funding. Thus even though actual scientists are invited to review, this seems like some sort of legitimacy washing, as almost anyone can review and no one will ever know who reviewed what. Thus when they give some of these quacks the money, they can say “but scientists reviewed this applications”