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.
Bibliographical noteFunding Information:
In response to calls to advance health equity in genomic research and precision medicine, a 2018 con ference at Meharry Medical College was convened as part of an NIH- funded project on “LawSeqSM: Build ing a Sound Legal Foundation for Translating Genomics into Clinical Application.”1 The conference, “How Can Law Support Development of Genomics and Precision Medicine to Advance Health Equity and Reduce Disparities?” brought together leading scholars in health disparities and legal studies, along with LawSeqSM project members, to specify important legal issues and brainstorm about sustainable solutions.2 This special issue of Ethnicity & Disease was a product of this work, and this article introduces and synthesizes discussion facilitated by the conference.
This article and special issue grew out of a November 2018 conference at Me-harry Medical College on “Law, Genomic Medicine & Health Equity: How Can Law Support Genomics and Precision Medicine to Advance the Health of Underserved Populations?” (https://consortium.umn.edu/ conference/law-genomic-medicine-health-equity-how-can-law-support-genomics-and-precision-medicine-advance-health-underserved-populations). That conference was presented as part of a project on “LawSeqSM: Building a Sound Legal Foundation for Translating Genomics into Clinical Application,” supported by a grant from the National Human Genome Research Institute (NHGRI) and National Cancer Institute (NCI) at the National Institutes of Health (NIH) under award number 1R01HG008605 (Susan M. Wolf, Ellen Wright Clayton, Frances Law-renz, principal investigators). The conference was co-sponsored by the Meharry-Vanderbilt Alliance; Vanderbilt University Medical Center; the University of Minnesota’s (UMN) Consortium on Law and Values in Health, Environment & the Life Sciences; and the Minnesota Precision Medicine Collaborative at UMN. The conference was immediately followed by a meeting of the LawSeqSM Working Group, including a brainstorming session by Working Group members and conference speakers on top legal issues, which aided this article’s synthesis of those issues. Members of the Working Group are listed at https://consortium.umn.edu/sites/ consortium.umn.edu/files/may2018_national_working_group_roster_w_photos.pdf. Vence L. Bonham’s participation in preparing this article and co-editing this symposium was supported by the Division of Intramural Research National, Human Genome Research Institute (Z01HG200403). Marino A. Bruce’s participation was supported by the National Institute on Minority Health and Health Disparities (U54MD010722). No statement in this article should be construed as an official position of the National Human Genome Research Institute, National Cancer Institute, National Institute on Minority Health and Health Disparities, National Institutes of Health, or Department of Health and Human Services. The contents of this article and special issue are solely the responsibility of the authors and do not necessarily represent the views of the participants in the brainstorming session, project funders, or conference co-sponsors. Thanks to all presenters and participants at the conference for their thoughtful contributions to the day’s discussion. Thanks also to Audrey Boyle for project/special issue management as well as Kate Hanson, Jon Watkins, and Eman Qureshi for research assistance.
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- Biomedical ethics
- Genomic medicine
- Health disparities
- Health equity
- Precision medicine