Ethical and Legal Considerations for the Inclusion of Underserved and Underrepresented Immigrant Populations in Precision Health and Genomic Research in the United States

Abstract

There has been growing recognition of the importance of diversity and inclusion of underrepresented minority populations, including immigrants, in genomic research and precision medicine. Achieving diversity has been difficult and has led some scholars to question whether the law is a help or a threat to the inclusion of underserved and underrepresented immigrant populations. In this commentary, I provide an overview of some of the many relevant legal issues affecting the inclusion of immigrants in genomic research and precision health initiatives, such as the All of UsSM Research Program. Development of research recruit­ment, retention, and data collection plans without also considering the legal and sociopolitical context within which such efforts are to be carried out is risky. Advanc­ing health policy with a goal of eliminating health disparities (or, at a minimum, ensur­ing that health disparities are not exacerbat­ed by genomic or precision health tech­nologies) requires us to acknowledge the negative effects that immigration policy and criminal justice policy have on the involve­ment of immigrants in such research and on their health directly. I conclude that it is not a question of whether the law is a help or a threat but, rather, whether we collectively will prioritize authentic diversity and inclu­sion policies and also insist on compliance with the laws intended to ensure the human right of every individual – regardless of im­migration status or national origin – to share in the advancement of science.Ethn Dis.2019;29(Suppl 3):641-650;doi:10.18865/ed.29.S3.641