Project Grant K01HG013968

Award Date 1/1/25
Completion Date 12/31/29
Dollars Obligated $202K
Federal Grant Program
93.172
Assistance Type
Project Grant
Place of Performance
Stanford, CA 94305, USA
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This federal Project Grant award, with ID K01HG013968, was provided by the National Human Genome Research Institute (NHGRI) under the Human Genome Research (CFDA 93.172) federal grant program. The award, totaling $202,058, will fund research to investigate the ethical challenges and facilitate values alignment between precision medicine researchers and disability communities, using cerebral palsy as a case study.

The key objectives are to: 1) Assess the values and priorities of stakeholders, including researchers, adults with cerebral palsy, caregivers, and clinicians, regarding the potential benefits and harms of precision medicine research on cerebral palsy; 2) Create and test briefing materials to guide democratic deliberation on this topic; and 3) Facilitate deliberative sessions to negotiate consensus on the ethical values that should guide future precision medicine research on cerebral palsy, which can serve as a model for other disabling genetic conditions. The research will be conducted at Stanford University over the award period from January 1, 2025 to December 31, 2029.

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