Challenges of using the concepts of race and ethnicity in the context of genomics research

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Speaker

Joanna L. Mountain, PhD
Senior Director of Research, 23andMe

Abstract

When 23andMe launched its Personal Genome Service in 2007, we avoided asking customers their race and ethnicity, and avoided using racial or ethnic terms within the service, with one or two exceptions. Once we launched our Research program, however, in order to conduct genome wide association studies efficiently, we began identifying the cohort of our research participants who identified or likely identified as of European origin. And, once we acquired an NIH grant, we no longer had the luxury of avoiding those terms, as the NIH insisted that we provide counts of research participants by sex, race, and ethnicity. Furthermore, once we had obtained the self-reported race and ethnicity data for millions of customers, and we had the capability of inferring the race and ethnicity of those who hadn’t yet provided that information, we found ourselves using that information in a variety of ways. In this talk I’ll describe the challenges we have faced when using racial and ethic categories in the context of a Direct-to-Consumer genetic testing service over the course of almost 15 years.