Nothing about Us without Us in Precision Medicine: A Call to Reframe Disability Difference in Genetics and Genomics
The Hastings Center Report
|December 21, 2024
Summary
Precision medicine must address ethical tensions by including disability communities. Greater collaboration and inclusive research are crucial for serving diverse populations effectively.
Area of Science:
- Bioethics
- Genetics
- Public Health
Background:
- Millions globally live with disabilities, yet precision medicine struggles with inclusive practices.
- Ethical challenges arise from precision medicine's focus on curing conditions versus disability identity.
- Existing frameworks lack sufficient consideration for disability perspectives in genomic research.
Purpose of the Study:
- To explore the ethical tensions in precision medicine regarding disability inclusion.
- To advocate for the ELSI (Ethical, Legal, and Social Implications) community's proactive role.
- To propose actionable priorities for enhancing disability inclusion in precision medicine.
Main Methods:
- Ethical analysis drawing on recognition and distributive justice.
- Review of current practices and challenges in precision medicine for disability communities.
- Conceptual framework development for disability inclusion.
Main Results:
- Precision medicine's goals can conflict with disability as a marginalized identity.
- The ELSI community has a critical role in bridging this gap.
- Two key priorities identified: enhanced collaboration and inclusive research design.
Conclusions:
- Proactive engagement by the ELSI community is essential for disability inclusion in precision medicine.
- Fostering collaboration between genetics professionals and disability communities is vital.
- Advocating for inclusive research design and accommodations will ensure equitable participation and benefit.
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