In 1990, I was diagnosed with cerebral palsy. Like many in the community, my parents were told explicitly that the condition has no genetic roots. Now, as research suggests that up to 30% of cases have genetic etiologies, robust community engagement is needed to ensure that the perspectives of the community shape the future of genetic research into cerebral palsy.
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Acknowledgements
This publication was supported by the National Human Genome Research Institute of the National Institutes of Health (NIH) under award number K01HG013968-01. K.T.M. is also the recipient of a K01 Instructor administrative supplement from Stanford’s Maternal and Child Health Research Institute. The content is solely the responsibility of the author and does not necessarily represent the official views of the NIH, any other government agency, or Stanford University.
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K.T.M. is a volunteer member of the American College of Medical Genetics and Genomics’s Community, Outreach and Engagement Committee. K.T.M. is also a member of the Bay Area Regional Advisory Committee to the California State Council on Developmental Disabilities. Serving in these roles did not directly influence the writing of this article. K.T.M. writes in his personal capacity and not as a member of either committee. However, his contributions to these committees have shaped how he sees himself as a person with CP who also conducts research with the CP community.
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Mintz, K.T. My call for community-engaged genetic research into cerebral palsy. Nat Genet 58, 1 (2026). https://doi.org/10.1038/s41588-025-02445-2
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DOI: https://doi.org/10.1038/s41588-025-02445-2