TY - JOUR
T1 - Key Expert Stakeholder Perceptions of the Law of Genomics
T2 - Identified Problems and Potential Solutions
AU - Cheung, Fook Yee
AU - Clatch, Lauren
AU - Wolf, Susan M.
AU - Clayton, Ellen Wright
AU - Lawrenz, Frances
N1 - Publisher Copyright:
© 2020 American Society of Law, Medicine & Ethics.
PY - 2020/3/1
Y1 - 2020/3/1
N2 - 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.
AB - 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.
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U2 - 10.1177/1073110520916997
DO - 10.1177/1073110520916997
M3 - Article
C2 - 32342788
AN - SCOPUS:85084170127
SN - 1073-1105
VL - 48
SP - 87
EP - 104
JO - Journal of Law, Medicine and Ethics
JF - Journal of Law, Medicine and Ethics
IS - 1
ER -