Adults with Intellectual Disability and Consent to Precision Medicine Research: Using Supported Decision-Making to Facilitate First-Person Consent.
Scientific discoveries and precision medicine research, especially efforts to identify individually tailored approaches to healthcare considering individual variability in genetics, environmental, and lifestyle factors, have the potential to transform health. This goal is especially critical for tho...
| Publicado en: | Journal of Law, Medicine & Ethics Vol. 54; pp. 1 - 12 |
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| Formato: | pictorial tables/charts Journal Article |
| Publicado: |
Cambridge University Press
2026 Supplement
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=196037817&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 196037817 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10731105 JME jtl: Journal of Law, Medicine & Ethics issn: 10731105 maglogo: N pubinfo: dt: 2026 Supplement vid: 54 pid: 15979 pub: Cambridge University Press artinfo: ui: 196037817 196037817 196037817 10.1017/jme.2025.10196 196037817 ppf: 1 ppct: 11 formats: tig: atl: Adults with Intellectual Disability and Consent to Precision Medicine Research: Using Supported Decision-Making to Facilitate First-Person Consent. aug: sug: subj: Persons with Intellectual Disabilities Psychosocial Factors Research Subjects Psychosocial Factors Consent (Research) Ethical Issues Research, Medical Individualized Medicine Decision Making Proxy Diversity, Equity, Inclusion Legislation and Jurisprudence Adult Research Ethics Autonomy Human Rights Guardianship, Legal Adult: 19-44 years ab: Scientific discoveries and precision medicine research, especially efforts to identify individually tailored approaches to healthcare considering individual variability in genetics, environmental, and lifestyle factors, have the potential to transform health. This goal is especially critical for those who experience social injustices and substantial health disparities. Yet the inclusion of adults with intellectual disability in precision medicine research, a growing field in clinical and translational genomic research, raises ethical, social, and legal concerns about their ability to make informed decisions to participate, and subsequently whether this population should be excluded altogether or enrolled only via proxy consent. Both practices demand scrutiny and are sometimes without legal or ethical justification. Supported decision-making, a reasonable accommodation and relatively recent legal and ethical construct, can facilitate first-person consent and maintain the prospective participant's position as the decision-maker. As such, supported decision-making is a promising development with critical implications for consent to precision medicine research. Using findings from our national survey with adults with intellectual disability and a legal analysis, our academic-community research partnership developed recommendations and a tool for using supported decision-making for enrollment in precision medicine research. We conclude with persistent challenges that need resolving to ensure the responsible inclusion of adults with intellectual disability in precision medicine research, and clinical research more generally. pubtype: Academic Journal doctype: pictorial tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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