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

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.

Inclusion of People with Disabilities in Research to Improve Medication Adherence: A Systematic Review

“…Given the biases and record of poor care from members of the medical community towards members of the disability community, it is unlikely that this process would favor the inclusion and appropriate treatment of persons with disabilities. 26,27 These findings are consistent with other work in this area. 12,16,17 This suggests that the issues of including people with disabilities' in research go beyond the medication adherence literature.…”

In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research

“…It will be important for researchers to understand these contextual factors and to develop measures to address these concerns. Educating precision medicine researchers about social justice and disability history and needs is a first step for increasing awareness of these issues [52]. Providing disability-accessible information about PMR and its goals is needed as well to ensure equality of opportunities to benefit from such research.…”

Project Inclusive Genetics: Exploring the impact of patient-centered counseling training on physical disability bias in the prenatal setting

“…However, as in other interventions, it is not known whether its impact will be long-lasting. For medical programs to address disability biases among healthcare providers and students, trainings should promote self-reflection about disability biases and provide information about the needs, rights, and culture of people with disabilities [ 28 ]. Consistent reinforcement of these principles across the educational stages of students and healthcare professionals is likely to yield the best outcome [ 25 ].…”