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Distributive justice, diversity, and inclusion in precision medicine: what will success look like?

2017
Cohn EG, Henderson GE, Appelbaum PS, for the Working Group on Representation and Inclusion in Precision Medicine Studies. Distributive justice, diversity and inclusion in precision medicine: what will success look like? Genetics in Medicine 2017;19(2):157-159. PMC5291806.

Abstract

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Precision medicine is based on a vision of effective preventive and therapeutic strategies grounded in precise understandings of the genetic and environmental determinants of disease. Recent advances in the science of precision medicine have yielded biomedical discoveries and pharmaceutical innovations.1 At the same time, critics of precision medicine suggest that because the primary drivers of health inequalities are social factors, precision medicine is unlikely to result in widespread benefit for population health.2,3 Even so, for precision medicine to realize its full potential—at the individual level for diagnosis and treatment, and at the population level for health promotion and disease prevention—risks and benefits must be shared across societal groups, a key principle of distributive justice. Without careful attention to the structure and design of studies, benefits may be realized by only select groups, exacerbating current health disparities.4 In the current climate of accelerating precision medicine, how to measure and achieve genetic, environmental, and social diversity of participants must receive the attention it requires. (Although we focus here on insuring genetic diversity in precision-medicine studies, as the number of studies that focus on social and environmental variables increases, many of the issues identified will be relevant to achieving diversity in exposure to those variables as well).