Key Expert Stakeholder Perceptions of the Law of Genomics: Identified Problems and Potential Solutions

Fook Yee Cheung, Lauren Clatch, Susan M. Wolf, Ellen Wright Clayton, Frances Lawrenz

Research output: Contribution to journalArticlepeer-review

1 Scopus citations

Abstract

The law applicable to genomics in the United States is currently in transition and under debate. The rapid evolution of the science, burgeoning clinical research, and growing clinical application pose serious challenges for federal and state law. Although there has been some empirical work in this area, this is the first paper to survey and interview key scientific and legal stakeholders in the field of genomics to help ground identification of the most important legal problems that must be solved to successfully integrate genomics into clinical care. The respondents in this study identified a wide range of interconnected issues, focusing specifically on the need for clear guidelines about how to use these data, fear of liability for those who use these data, and the need to protect patients from use of this information particularly by insurers, while endorsing data sharing. Developing legal strategies to support appropriate use of genomics now and in the future clearly will require making trade-offs, taking into account the full complexity of this legal ecosystem.

Original languageEnglish (US)
Pages (from-to)87-104
Number of pages18
JournalJournal of Law, Medicine and Ethics
Volume48
Issue number1
DOIs
StatePublished - Mar 1 2020

Bibliographical note

Funding Information:
Each author of this article reports this publication is conducted as part of the National Human Genome Research Institute (NHGRI) and National Cancer Institute (NCI) at the National Institutes of Health (NIH) grant 1R01HG008605 on “LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application,” during the conduct of the study. Acknowledgments

Funding Information:
Preparation of this article was funded by National Human Genome Research Institute (NHGRI) and National Cancer Institute (NCI) grant #1R01HG008605 (Wolf, Clayton, and Lawrenz, PIs), for a project on “LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application.” We are grateful to the project's Working Group members (listed at https://consortium.umn.edu/sites/consortium.umn.edu/files/may2018_national_working_group_roster_w_photos.pdf ) for participation in the modified Delphi process described in the paper and for additional helpful input. This study was approved by the University of Minnesota IRB (#1603S85102) and Vanderbilt University Medical Center IRB (#170760). The views expressed in this article are those of the authors and not necessarily those of the funders.

Publisher Copyright:
© 2020 American Society of Law, Medicine & Ethics.

PubMed: MeSH publication types

  • Journal Article
  • Research Support, N.I.H., Extramural

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