Cultivating inclusivity in precision medicine research: disability, diversity, and cultural competence

This article discusses the importance of disability inclusivity in PMR and the construct —and challenges—of disability as a cultural community. Reviewing and extrapolating from studies in healthcare settings, the article considers three interrelated issues that are likely to impact disability inclusivity in PMR: disability accessibility and accommodation; disability stigma and uncon sious bias; and disability language and communication. Next, disability competency trainings that were developed in healthcare settings are surveyed and their applicability for PMR is discussed. The arguments advanced are that disability culture competency among precision medicine researchers, perso nnel, and oversight committees is essential to upholding the welfare and rights of human subjects with disabilities in PMR; that engagement with disability communities is imperative for this endeavor; and that such knowledge of disability culture is crucial for cultivating inclusivity of people with different (dis)abilities in PMR.

Source: Journal of Community Genetics - December 12, 2018 Category: Genetics & Stem Cells Source Type: research