ArticleThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics2020
Key Expert Stakeholder Perceptions of the Law of Genomics: Identified Problems and Potential Solutions.
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Article in The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
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3 citing papers in PubMed.
- Universal Germline and Tumor Genomic Testing Needed to Win the War Against Cancer:Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2023Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Integrating Rules for Genomic Research, Clinical Care, Public Health Screening and DTC Testing: Creating Translational Law for Translational Genomics.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
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Authors and funding
5 authors.
Fook Yee CheungFook Yee Cheung, M.S. LCGC., is a genetic counselor graduated from the Department of Genetics, Cell Biology & Development in the College of Biological Sciences at the University of Minnesota. Lauren Clatch is a J.D./Ph.D. candidate at the School of Law and the Department of Psychology at the University of Minnesota. Susan M. Wolf, J.D., is McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine; and Chair of the Consortium on Law and Values in Health, Environment & the Life Sciences, University of Minnesota. She is a Principal Investigator (PI) on NIH/NHGRI/NCI grant 1R01HG008605 on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application." Ellen Wright Clayton, M.D., J.D., is Craig-Weaver Professor of Pediatrics and Professor of Health Policy, Vanderbilt University Medical Center, and Professor of Law, Vanderbilt University. She is a Principal Investigator (PI) on NIH/NHGRI/NCI grant 1R01HG008605 on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application." She is also Co-PI on "GetPreCiSe: The Center for Genetic Privacy and Identity in Community Settings," an NIH-funded Center of Excellence in ELSI Research. Frances Lawrenz, Ph.D., is Professor of Educational Psychology and Associate Vice President for Research at the University of Minnesota. Her research focuses on science and mathematics program evaluation, utilizing a variety of techniques and usually involving mixed methodologies. She is a Principal Investigator (PI) on NIH/NHGRI/NCI grant 1R01HG008605 on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application."
Lauren ClatchFook Yee Cheung, M.S. LCGC., is a genetic counselor graduated from the Department of Genetics, Cell Biology & Development in the College of Biological Sciences at the University of Minnesota. Lauren Clatch is a J.D./Ph.D. candidate at the School of Law and the Department of Psychology at the University of Minnesota. Susan M. Wolf, J.D., is McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine; and Chair of the Consortium on Law and Values in Health, Environment & the Life Sciences, University of Minnesota. She is a Principal Investigator (PI) on NIH/NHGRI/NCI grant 1R01HG008605 on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application." Ellen Wright Clayton, M.D., J.D., is Craig-Weaver Professor of Pediatrics and Professor of Health Policy, Vanderbilt University Medical Center, and Professor of Law, Vanderbilt University. She is a Principal Investigator (PI) on NIH/NHGRI/NCI grant 1R01HG008605 on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application." She is also Co-PI on "GetPreCiSe: The Center for Genetic Privacy and Identity in Community Settings," an NIH-funded Center of Excellence in ELSI Research. Frances Lawrenz, Ph.D., is Professor of Educational Psychology and Associate Vice President for Research at the University of Minnesota. Her research focuses on science and mathematics program evaluation, utilizing a variety of techniques and usually involving mixed methodologies. She is a Principal Investigator (PI) on NIH/NHGRI/NCI grant 1R01HG008605 on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application."
Susan M WolfFook Yee Cheung, M.S. LCGC., is a genetic counselor graduated from the Department of Genetics, Cell Biology & Development in the College of Biological Sciences at the University of Minnesota. Lauren Clatch is a J.D./Ph.D. candidate at the School of Law and the Department of Psychology at the University of Minnesota. Susan M. Wolf, J.D., is McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine; and Chair of the Consortium on Law and Values in Health, Environment & the Life Sciences, University of Minnesota. She is a Principal Investigator (PI) on NIH/NHGRI/NCI grant 1R01HG008605 on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application." Ellen Wright Clayton, M.D., J.D., is Craig-Weaver Professor of Pediatrics and Professor of Health Policy, Vanderbilt University Medical Center, and Professor of Law, Vanderbilt University. She is a Principal Investigator (PI) on NIH/NHGRI/NCI grant 1R01HG008605 on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application." She is also Co-PI on "GetPreCiSe: The Center for Genetic Privacy and Identity in Community Settings," an NIH-funded Center of Excellence in ELSI Research. Frances Lawrenz, Ph.D., is Professor of Educational Psychology and Associate Vice President for Research at the University of Minnesota. Her research focuses on science and mathematics program evaluation, utilizing a variety of techniques and usually involving mixed methodologies. She is a Principal Investigator (PI) on NIH/NHGRI/NCI grant 1R01HG008605 on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application."
Ellen Wright ClaytonFook Yee Cheung, M.S. LCGC., is a genetic counselor graduated from the Department of Genetics, Cell Biology & Development in the College of Biological Sciences at the University of Minnesota. Lauren Clatch is a J.D./Ph.D. candidate at the School of Law and the Department of Psychology at the University of Minnesota. Susan M. Wolf, J.D., is McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine; and Chair of the Consortium on Law and Values in Health, Environment & the Life Sciences, University of Minnesota. She is a Principal Investigator (PI) on NIH/NHGRI/NCI grant 1R01HG008605 on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application." Ellen Wright Clayton, M.D., J.D., is Craig-Weaver Professor of Pediatrics and Professor of Health Policy, Vanderbilt University Medical Center, and Professor of Law, Vanderbilt University. She is a Principal Investigator (PI) on NIH/NHGRI/NCI grant 1R01HG008605 on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application." She is also Co-PI on "GetPreCiSe: The Center for Genetic Privacy and Identity in Community Settings," an NIH-funded Center of Excellence in ELSI Research. Frances Lawrenz, Ph.D., is Professor of Educational Psychology and Associate Vice President for Research at the University of Minnesota. Her research focuses on science and mathematics program evaluation, utilizing a variety of techniques and usually involving mixed methodologies. She is a Principal Investigator (PI) on NIH/NHGRI/NCI grant 1R01HG008605 on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application."
Frances LawrenzFook Yee Cheung, M.S. LCGC., is a genetic counselor graduated from the Department of Genetics, Cell Biology & Development in the College of Biological Sciences at the University of Minnesota. Lauren Clatch is a J.D./Ph.D. candidate at the School of Law and the Department of Psychology at the University of Minnesota. Susan M. Wolf, J.D., is McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine; and Chair of the Consortium on Law and Values in Health, Environment & the Life Sciences, University of Minnesota. She is a Principal Investigator (PI) on NIH/NHGRI/NCI grant 1R01HG008605 on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application." Ellen Wright Clayton, M.D., J.D., is Craig-Weaver Professor of Pediatrics and Professor of Health Policy, Vanderbilt University Medical Center, and Professor of Law, Vanderbilt University. She is a Principal Investigator (PI) on NIH/NHGRI/NCI grant 1R01HG008605 on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application." She is also Co-PI on "GetPreCiSe: The Center for Genetic Privacy and Identity in Community Settings," an NIH-funded Center of Excellence in ELSI Research. Frances Lawrenz, Ph.D., is Professor of Educational Psychology and Associate Vice President for Research at the University of Minnesota. Her research focuses on science and mathematics program evaluation, utilizing a variety of techniques and usually involving mixed methodologies. She is a Principal Investigator (PI) on NIH/NHGRI/NCI grant 1R01HG008605 on "LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application."
Funding
LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical ApplicationR01HG008605 · NHGRI · UNIVERSITY OF MINNESOTA · PI CLAYTON, ELLEN WRIGHT, LAWRENZ, FRANCES PATRICIA · 2016 to 2018
$2.2MNHGRI NIH HHS R01 HG008605
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.
Indexed as
AdultAdvisory CommitteesConfidentialityEmpirical ResearchFemaleGenomicsHumansLiability, LegalMaleMiddle AgedPrivacyQuality of Health CareStandard of CareSurveys and QuestionnairesUnited States
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