Stakeholders’ engagement is key to achieving the promises of precision medicine research. It is needed in order to establish a sufficiently powered cohort of diverse groups that will allow tailoring disease diagnosis, treatment, and prevention to individual variability in genes, environment, and lifestyle. It is also needed to ensure that research priorities are in sync with the health needs of participants and for curtailing health disparities in the US.
Cognizant of these issues, precision medicine initiatives, including are increasingly investing time and resources to engage potential participants in their studies. the All of Us Research Program (AoU) is exemplary in this regard, focusing in particular on racial and ethnic minorities as well as Native Americans who have been historically underrepresented in genomic research.
But what about people with disabilities?
This question may seem to be off target. After all, persons with disabilities have long been prime targets of genotyping, and their enrollment in genomic research is ongoing.
However, a new paper published in Genetics in Medicine highlights the need to expand engagement efforts to—rather than mere enrollment of—people with disabilities in precision medicine initiatives. There are several reasons as to why such engagement is justified, although the common expectation that such genomic endeavors will eliminate impairments is not the pre-eminent one. Indeed, disability is not synonymous with bad health and medical determinations of disabilities may not resonate with the life experiences of those who are commonly being targeted for “fixing.” Rather, engagement of persons with disabilities in precision medicine research is needed primarily because such inclusion recognizes persons with disabilities as equal members of society and because the disability community—however delineated—constitutes the largest, yet unrecognized, health disparity group in the US.
Engaging persons with disabilities in precision medicine initiatives, including the AoU program, is unlikely to resolve disagreements about the appropriateness of prenatal genetic testing or the host of other ethical, legal, and social issues that arise from such research—from the blurring distinction between clinical and research settings to access to medical benefits and emerging notions of genomic responsibilities and blame of individuals and communities for ill health. Unfortunately, nor can disability inclusion be immediately implemented: there is a need to learn about the barriers for participation as experienced by people with disabilities, understand their health priorities, and, importantly, to endorse measures that are responsive to this community’s needs. But, it will be impossible to learn about either without engaging the disability community in these questions. As suggested in the paper, it is not a moment too soon to begin this conversation.