The Ethics of Inclusion: Conceptualizing Diversity in Genomics Research

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In the emerging era of precision medicine, there have been increasing calls for diversity and the inclusion of historically under-represented racial and ethnic populations in biobanking and precision medicine research. Recent findings suggest that the lack of diversity in genetic repositories may pose serious challenges to identify genetic variants that are clinically significant in certain populations. These concerns have been linked to ethical concerns over disparities in health and disease among racial and ethnic groups. Despite increasing scrutiny of diversity in recruitment efforts in genomics research, there are few studies that integrate scientific, social and ethical concerns that are attached to discourse on diversity. This project aims to provide a conceptual framework of diversity that is multi-disciplinary and takes into the historical and social context in which diversity is invoked in genomics. The specific aims of this research are: Aim 1: To investigate how discourse on human diversity and difference in population based genomics research has changed over time. Aim 2: To identify the ethical implications for inclusion of diversity for researcher-participant relationships, including issues related but not limited to “recruitment,” “consent,” “group harm” and “benefit-sharing.” Aim 3. To develop a conceptual framework for diversity in genomics research that addresses ethical values of respect, beneficence and justice.