Q&A: Diversity and inclusion in precision medicine research

Despite many calls recently for diversity in clinical research, such initiatives only think about recruitment. A new paper argues that studies ought to also account for data misuse and sharing results with vulnerable populations, especially since science has historically given them reasons to be distrustful of the research enterprise. I spoke with Sandra Soo-Jin Lee, a bioethicist at Columbia University and co-author of the perspective in Science, to learn more.

Why do we need to be more inclusive in our studies?

Diversity and inclusion isn't just a moral or political issue. Our data sets are so skewed to white Europeans that we run the risk of identifying genetic variants as causal for diseases when they're not. It's really a research problem that’s hurting our science.

What would progress look like?

Incorporating data not only in terms of genetic factors, but also built-in environment and social factors. Inclusion should also include ethicists, social scientists, and other experts so we can understand empirically how these different categories inform science.