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

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

Publikováno v: J Law Med Ethics

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. Alt

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::92c8ae337a594c8fe1ee1284dbce76bc
https://pubmed.ncbi.nlm.nih.gov/32342788

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

Autor: Cheung FY; Fook 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.', Clatch L; Fook 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.', Wolf SM; Fook 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.', Clayton EW; Fook 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.', Lawrenz F; Fook 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.'

Publikováno v: The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics [J Law Med Ethics] 2020 Mar; Vol. 48 (1), pp. 87-104.