A Prospectus on Ethical Issues in the Context of Collaborations Between Academic and Non-academic Institutions on Genetics Research
Emily Bullis, MA and Anjali Shastri, PhD - 23andMe
Genetics research has been far from equitable in terms of engaging representative numbers of participants of non-European origins. 23andMe, with one of the largest research cohorts in the world, aims to increase the diversity of its genetic data and improve its analysis methods so that new discoveries and products benefit people of all racial and ethnic backgrounds. Through our Populations Collaborations Program, 23andMe partners with researchers who are engaging populations underrepresented in genetics research by: a) providing genotyping at no cost; b) ensuring that appropriate institutional and local ethics approvals are acquired; and, c) providing grants for community support and project-related activities. Since the launch of the Program, both collaborators and international organizations have noted a need for ethical accountability in genomics research involving underrepresented populations. In this presentation we will highlight specific ethical challenges we have encountered in our recent experiences and described in emerging ethical frameworks, including: obtaining community input, acquiring informed consent, tensions between broad and restrictive data access, the need to identify appropriate benefits and opportunities for local capacity building, and lastly, issues regarding the return of research results. Drawing from these topics, we will describe an ethical framework we are developing for 23andMe’s purposes, as well as our plan to extend this framework to a broader set of collaborations between academics and non-academics engaging underrepresented populations in genetics research.