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Precision Medicine, Health Disparities and Ethics: The Case for Disability Inclusion

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Sabatello M. Precision medicine, health disparities, and ethics: the case for disability inclusion. Genetics in medicine : official journal of the American College of Medical Genetics. 2018 April;20(4):397-399. PubMed PMID: 28771252; PubMed Central PMCID: PMC5797520.


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Precision medicine research (PMR) is gaining momentum across the healthcare landscape in the United States (U.S.). The 2015 announcement of the Precision Medicine Initiative accelerated this process, making PMR a priority on a national level and committing significant budgetary allocations to such programs. Aside from advancing scientific knowledge, a major promise of precision medicine (PM) is that it will curtail the deep health disparities that have plagued the country. Yet, while efforts are ongoing to ensure inclusivity of racial and ethnic minorities, the views of persons with disabilities about PMR are not well-studied. Although several studies explored the perspectives of U.S. patients’ and lay public views on genomic research, deriving generalizable disability responses from these studies is impossible because disability is not a required category for reporting. Still, persons with disabilities—a commonly used umbrella term, which, following the U.S. census and Convention on the Rights of Persons with Disabilities, encompasses persons with long-term physical, mental, intellectual/developmental, and sensory (e.g., blindness) impairments—merit attention. Although some disabilities are associated with health conditions that require ongoing treatment, disability and good health are not mutually exclusive. Patients and healthy persons with disabilities may thus have different views and needs for participating in PMR. Involving these populations in PMR is necessary for fulfilling PM’s scientific goals and promise of health equity, and for upholding the equal opportunity of persons with disabilities—22% of U.S. adults, as the CDC reported in 2015—to enjoy the benefits of PMR.