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 journalArticle

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

PubMed: MeSH publication types

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

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