People with lived experience of mental health conditions have historically been excluded from meaningful participation in psychiatric genetic and genomic research. This Comment outlines five key actions that the US National Institute of Mental Health, the largest funder of mental health research, can take to more effectively center people with lived experience in genetic and genomic research.
This is a preview of subscription content, access via your institution
Access options
Subscribe to this journal
Receive 12 digital issues and online access to articles
$79.00 per year
only $6.58 per issue
Buy this article
- Purchase on SpringerLink
- Instant access to the full article PDF.
USD 39.95
Prices may be subject to local taxes which are calculated during checkout
References
Wallcraft, J. & Nettle, M. in Handbook of Service User Involvement in Mental Health Research (eds. Wallcraft, J. et al.) 1–11 (John Wiley & Sons, 2009).
White, R. et al. Nat. Ment. Health 1, 157–159 (2023).
Wolpert, M. et al. World Psychiatry 22, 234–235 (2023).
National Mental Health Commission. Australian Government https://go.nature.com/49WJj1u (April 2022).
Davis, S. et al. Lancet Psychiatry 11, 8–9 (2024).
Lincoln, A. K. et al. Community Ment. Health J. 52, 1015–1021 (2016).
Wallcraft, J., Schrank, B. & Amering, M. (eds.) Handbook of Service User Involvement in Mental Health Research 1st edn. (John Wiley & Sons, 2009).
Rowlands, S. & Amy, J. J. J. Intellect. Disabil. 23, 233–249 (2019).
Frueh, C. et al. Psychiatr. Serv. 56, 1123–1133 (2005).
UN Committee on the Rights of Persons with Disabilities. United Nations Digital Library https://go.nature.com/3NL6Pan (12 May 2016).
Shim, J. K. et al. AJOB Empir. Bioeth. 14, 185–196 (2023).
Patterson, S., Trite, J. & Weaver, T. Br. J. Psychiatry 205, 68–75 (2014).
Patient-Centered Outcomes Research Institute. PCORI https://go.nature.com/4q17KAN (accessed 25 November 2024).
Gitik, M. et al. World Psychiatry 23, 292–293 (2024).
Author information
Authors and Affiliations
Contributions
A. Stevenson and C.M.N. jointly conceptualized the commentary and contributed equally to its development. A. Stevenson led drafting of the initial manuscript, and C.M.N. contributed substantially to writing, conceptual refinement, and critical revision. M.B., C.R.H., B.K.K., D.A.S., A. Smith, A.W., Z.Z. and K.C.K. provided input, contextual expertise, and critical feedback. All authors reviewed and approved the final manuscript.
Corresponding author
Ethics declarations
Competing interests
K.C.K. has been a paid consultant for Baker Hostetler, Discovery Vitality, the US Department of Justice, the Treehouse Family Foundation, and Covington and Burling, and receives royalties from Guilford Press and Oxford University Press.
Rights and permissions
About this article
Cite this article
Stevenson, A., Nguyen, C.M., Bortz, M. et al. Centering lived experience within psychiatric genetic and genomic research at the National Institute of Mental Health. Nat. Mental Health 4, 313–315 (2026). https://doi.org/10.1038/s44220-026-00591-y
Published:
Version of record:
Issue date:
DOI: https://doi.org/10.1038/s44220-026-00591-y
