Nothing about Us without Us in Precision Medicine: A Call to Reframe Disability Difference in Genetics and Genomics
Sixty-one million Americans and approximately a billion people worldwide live with some form of disability that limits one or more major life activities. The field of precision medicine continues to grapple with how to best serve disability communities. In this paper, we suggest that precision medic...
| Authors: | ; ; |
|---|---|
| Tipo de documento: | Recurso Electrónico Artigo |
| Idioma: | Inglês |
| Verificar disponibilidade: | HBZ Gateway |
| Interlibrary Loan: | Interlibrary Loan for the Fachinformationsdienste (Specialized Information Services in Germany) |
| Publicado em: |
2024
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| Em: |
The Hastings Center report
Ano: 2024, Volume: 54, Páginas: S41-S48 |
| Outras palavras-chave: | B
community-engaged research in genetics and genomics
B recognition justice B Distributive Justice B mere difference view of disability B People with disabilities B research ethics |
| Acesso em linha: |
Volltext (kostenfrei) Volltext (kostenfrei) |
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| 520 | |a Sixty-one million Americans and approximately a billion people worldwide live with some form of disability that limits one or more major life activities. The field of precision medicine continues to grapple with how to best serve disability communities. In this paper, we suggest that precision medicine faces an ethical tension between its goal to treat or cure disabling conditions and views that consider disability as a marginalized identity. We appeal to the concepts of recognition justice and distributive justice to argue that the ELSI community should take a more proactive role in promoting disability inclusion in precision medicine's practice and research. We also highlight two priorities for the ELSI community moving forward: facilitating greater collaboration between genetics and genomic professionals and disability communities and advocating for inclusive research design and disability accommodations in the research process. | ||
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