Recommendations for data sharing in populations at higher risk of discrimination: the case of Autism research

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Grant, A., Axbey, H., Nisa, A., Waldock, K. E., McDonald, K., Beck, K. B., Sabatello, M., Moura, I., Kirby, A. V., Rutenberg, E., Breitenfeldt, K. E., Williams, K., Craine, M., Wilkins, A., Caemawr, S., Holloway, W., Sinfield, M., Ribbons, K., Raymaker, D. M.,..., & Ellis, R. (2026). Recommendations for data sharing in populations at higher risk of discrimination: the case of Autism research [Registration]. OSF. https://doi.org/10.17605/osf.io/kp5yu

Publication date: 23 Mar 2026 Added to AutiHub: 11 Jul 2026 Type: Registration Article language: English
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Authors

Publication authors
24
Publication authors identified as autistic
9 / 24 (37.5%)
  1. Aimee Grant *
  2. Harriet Axbey *
  3. Ami Nisa
  4. Krysia Emily Waldock *
  5. Katherine McDonald
  6. Kelly B. Beck
  7. Maya Sabatello
  8. Ian Moura
  1. Anne V. Kirby
  2. Elizabeth Rutenberg
  3. Kaitlyn E. Breitenfeldt
  4. Kathryn Williams *
  5. Monique Craine *
  6. Abigail Wilkins
  7. Selena Caemawr *
  8. Willow Holloway *
  1. Madeleine Sinfield
  2. Kay Ribbons
  3. Dora M Raymaker *
  4. Rachel Kripke-Ludwig
  5. Mary Baker-Ericzén
  6. Joseph Vera
  7. Christina Nicolaidis
  8. Rebecca Ellis *

Abstract

In line with current practice for transparency and resource sharing, data sharing has become common in Autism research. In the context of a history of eugenics, additional risks are present, including from identification, misinterpretation and deficit-framings of Autism. We aimed to (i) describe our “opt-in” data sharing approach in two studies based in the USA (AASPIRE Outcomes Project) and the UK (Autism from Menstruation to Menopause; AM2M); (ii) report on how many people opted to data share on two of these studies, and (iii) co-develop recommendations for ethical data sharing in Autism research. In the AASPIRE Outcomes Project, 680 of 870 (78.2%) participants opted to share quantitative survey data, with hardly any differences by 55 demographic, disability, or health characteristics. In AM2M 36 of 100 (36.0%) participants opted to share longitudinal qualitative data, with significant variation among menopause status (p<0.001), ethnicity (p = 0.013) and education (p = 0.042). We provide recommendations for ethical data sharing in Autism research, directed at governments and policy makers, research funders, data repositories, ethics boards and researchers. We favour use of “opt-in” consent models and Autistic community participation. We hope that these recommendations will provide the needed stronger protections for Autistic research participants.

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