Cultivating inclusivity in precision medicine research: disability, diversity, and cultural competence
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ORIGINAL ARTICLE
Cultivating inclusivity in precision medicine research: disability, diversity, and cultural competence Maya Sabatello 1,2 Received: 4 May 2018 / Accepted: 3 December 2018 # Springer-Verlag GmbH Germany, part of Springer Nature 2018
Abstract Cultural competence is increasingly viewed as key for the inclusion of diverse populations in precision medicine research (PMR) in the USA. Precision medicine researchers and personnel are thus increasingly expected to undergo cultural competency trainings and to engage with relevant racial/ethnic communities to ensure that all research components are culturally and linguistically sensitive to these communities. However, the need for PMR enterprises to ensure competence with and understanding of disability rights, history, and needs (hereinafter disability culture competency) have not received attention. 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 unconsious 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, personnel, 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. Keywords Disability . Precision medicine research . Health disparities . Cultural competence
Introduction Cultural competence is increasingly viewed as a foundational pillar for cultivating inclusivity of diverse populations in precision medicine research (PMR) (The Precision Medicine Initiative Working Group 2015). Several inter-related and accumulative considerations have led to this development: the need to create racially/ethnically diverse cohorts that are sufficiently powered for meaningful scientific findings to emerge (Petrovski and Goldstein 2016; Cohn et al. 2016); the sizable non-white population in the USA that continues to be underrepresented in genomic research (Popejoy and Fullerton 2016); the understanding that, while trust plays a key role in * Maya Sabatello [email protected] 1
Center for Research on Ethical, Legal & Social Implications of Psychiatric, Neurologic & Behavioral Genetics, Columbia University, New York, NY, USA
2
NY State Psychiatric Institute, 1051 Riverside Drive, Unit 122, New York, NY 10032, USA
decisions to participate in PMR, incidents of inequitable and unethical treatment (e.g., the Tuskegee Study of Untreated Syphil
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