How Can Law Support Development of Genomics and Precision Medicine to Advance Health Equity and Reduce Disparities?

Author information

1: Consortium on Law and Values in Health, Environment & the Life Sciences; Law School; Medical School, University of Minnesota, Minneapolis, MN.
2: Social and Behavioral Research Branch, Division of Intramural Research, National Human Genome Research Institute, National Institutes of Health, Bethesda, MD.
3: Program for Research on Faith and Health, Vanderbilt Center for Research on Men's Health, Center for Medicine, Health, and Society, Vanderbilt University, Nashville, TN.

Abstract

There is growing recognition that the genomic and precision medicine revolution in health care can deepen health disparities. This has produced urgent calls to prioritize inclusion of historically underrepresented populations in research and to make genomic databases more inclusive. Answering the call to address health care disparities in the delivery of genomic and precision medicine requires a consideration of important, yet understudied, legal issues that have blocked progress. This article introduces a special issue of Ethnicity & Disease which contains a series of articles that grew out of a public conference to investigate these legal issues and propose solutions. This 2018 conference at Meharry Medical College was part of an NIH-funded project on "LawSeqSM" to evaluate and improve the law of genomics in order to support appropriate integration of genomics into clinical care. This conference was composed of presentations and interactive sessions designed to specify the top legal barriers to health equity in precision medicine and stimulate potential solutions. This article synthesizes the results of those discussions. Multiple legal barriers limit broad inclusion in genomic research and the development of precision medicine to advance health equity. Problems include inadequate privacy and anti-discrimination protections for research participants, lack of health coverage and funding for follow-up care, failure to use law to ensure access to genomic medicine, and practices by research sponsors that tolerate and entrench disparities. Analysis of the legal barriers to health equity in precision medicine is essential for progress. Progressive use of law is vital to avoid worsening of health care disparities.