Ellen Clayton 
Craig-Weaver Professor of Pediatrics; Professor of Law; Professor of Health Policy | Vanderbilt University
Nashville, TN, UNITED STATES
World-renowned medical ethicist working at the intersection of law, medicine and public health, with a focus on genetics.
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Biography
Ellen Wright Clayton is an internationally respected leader particularly in the field of law and genetics. Professor Clayton’s scholarship currently focuses on the translation of genomics to clinical care, and she currently is co-principal investigator of two grants, one involving a transdisciplinary Center for Excellence in ELSI Research addressing genomic privacy and another analyzing legal issues in liability, quality, privacy and access, and the clinical-research interface, all with the goal of developing more effective solutions. She has published two books and more than 175 scholarly articles and chapters in medical journals, interdisciplinary journals and law journals on the intersection of law, medicine and public health. In addition, she has collaborated with faculty and students throughout Vanderbilt and in many institutions around the country and the world on interdisciplinary research projects and helped to develop policy statements for numerous national and international organizations. An active participant in policy debates, she has advised the National Institutes of Health as well as other federal and international bodies on an array of topics ranging from children's health to the ethical conduct of research involving human subjects. Her teaching interests include law and genomics, bioethics and law, reproductive rights, and public health and research ethics. Professor Clayton has worked on numerous projects for the National Academy of Medicine, including serving as a member of its Advisory Council and chair of the Board on Population Health and Public Health Practice. She is currently co-chair of the Report Review Committee of the National Academies of Sciences, Engineering and Medicine. She is an elected Fellow of the American Academy for the Advancement of Science.
Areas of Expertise (13)
Gender and the Law
Legal and Ethical Issues in Children's and Women's Health
Research Ethics
Genetics and Health Policy
Medical Ethics
General Pediatrics
Gene Editing
Genetic Privacy
Biomedical Ethics and Law
Legal and Ethical Issues Raised by Genetics
Genetics
Public Health Law
Family Law
Accomplishments (5)
Frank H. Morriss, Jr. Leadership Award, University of Iowa Department of Pediatrics and University of Iowa Foundation (professional)
2015
David P. Rall Medal, Institute of Medicine (professional)
2013
Member, American Pediatric Society (professional)
2013
Fellow, American Association for the Advancement of Science (professional)
2012
William G. Bartholome Award for Ethical Excellence, American Academy of Pediatrics (professional)
2010
Education (4)
Harvard Medical School: M.D. 1985
Yale Law School: J.D. 1979
Stanford University: M.S., Biology 1976
Duke University: B.S., Zoology 1974
Links (4)
Selected Media Appearances (10)
Their DNA Hides a Warning, but They Don’t Want to Know What It Says
New York Times online
2022-01-21
But Dr. Ellen Clayton, professor of law and genetics at Vanderbilt, worries about the true impact of returning genetic findings to research participants. She cautioned that when researchers call a participant to say they’ve found a variant, “you are getting information that is not standard of care in medicine.” And, she added, it’s not clear that there will be any outcome other than worrying people.
Opinion | The Dangerous Legal Illusion of ‘Parental Rights’
Politico online
2021-09-03
Mask mandates by schools have quickly become one of the most politically charged aspects of the pandemic. At least six states in the South and Southwest have banned or undercut school mask mandates. Incensed anti-mask parents are speaking out at school board meetings and public protests. On the first day of school in Amador County, Calif., one parent became so irate when he saw his daughter walking out of school in a mask that he began arguing with the principal and ended up in a bloody fight with a teacher.
Tennessee under federal investigation for Gov. Lee’s mask ‘opt out’ order
WKRN tv
2021-08-31
“Schools, in fact, have a real obligation to keep children safe,” said Ellen Wright Clayton, a Vanderbilt professor of pediatrics, law and health policy.
Mask debate moves from school boards to courtrooms
AP News online
2021-08-28
“This idea of parental freedom to decide what’s best for their child is not unlimited. It has never been unlimited in our system,” said Ellen Clayton, a pediatrician and law professor at Vanderbilt Law School in Nashville, Tennessee.
The South is leading the fight against Roe v. Wade. Texas' new abortion law could speed up the legal battles
Tennessean
2021-09-12
"It's really clear that this is not about helping women make good decisions about what to do," said Ellen Clayton, a Vanderbilt University professor of law and health policy. "This is about getting in the way of their decision about what to do."
Medical ethicist on encourages everyone to get vaccinated, but only once eligible
NewsChannel 5 tv
2021-03-22
But even so, there are still some people not categorized to get the vaccine. So we asked a Vanderbilt medical ethicist whether it is ethical for those people to get a vaccine right now, anyway. Vanderbilt medical ethics Dr. Ellen Clayton says that depends. "First of all, it’s ethically important to get the vaccine, not only for your own health but to stop this awful pandemic," Clayton said.
DNA Data Shared in Ways Patients May Find Surprising
Wall Street Journal online
2019-08-12
“The data about them might not be as readily available for research as it might be otherwise,” said Vanderbilt University Professor Dr. Ellen Wright Clayton, who studies genetic-research ethics. “We have to look seriously about whether the yield is as high as they hope it is.”
Would You Want a Computer to Judge Your Risk of H.I.V. Infection?
New York Times online
2019-07-30
Clearly, doctors should not spring such a result on patients, said Dr. Ellen Wright Clayton, a professor of health policy at Vanderbilt University. Instead, she said, they should ask patients first if they want their records reviewed by the software.
As gene testing surges, lawsuits aren’t far behind
Science Magazine online
2019-05-07
While DNA testing upends the practice of medicine, U.S. laws aren’t keeping pace. That’s one message from a nearly finished 3-year, $2 million project called LawSeq, which aims to build a legal foundation to support genomic medicine. Doctors and other health care providers are already facing lawsuits that broach new legal terrain—and sometimes even hold them liable for how they offer, interpret, and counsel patients about genetic tests. “To say that this is a gnarly issue is a wild understatement,” said Ellen Wright Clayton, an expert in law and genetics at Vanderbilt University in Nashville, last month at a symposium about LawSeq at the University of Minnesota in Minneapolis. Clayton helped plan the conference and co-leads LawSeq.
The US Urgently Needs New Genetic Privacy Laws
WIRED online
2019-05-01
To close this loophole, US policymakers could reclassify DNA as a piece of personally identifying information in its own right. But Ellen Wright Clayton, cofounder of the Center for Biomedical Ethics and Society at Vanderbilt and one of the leaders of LawSeq, was quick to point out that it won’t stop people from putting their personal genetic records on the internet. “It’s the greatest threat to privacy there is right now,” she said. It’s not enough to opt out of genetic testing yourself, because of the way DNA ties families together across geographies and generations. “The law has nothing to say about whether I can prevent my sisters or cousins or my kids from putting their genomic sequence out there.”
Selected Articles (3)
Improving recommendations for genomic medicine: building an evolutionary process from clinical practice advisory documents to guidelines
Genetics in MedicineWylie Burke, Ellen Wright Clayton, Susan M Wolf, Susan A Berry, Barbara J Evans, James P Evans, Ralph Hall, Diane Korngiebel, Anne-Marie Laberge, Bonnie S LeRoy, Amy L McGuire
2019 Genomic sequencing and multigene panel tests are moving rapidly into clinical practice for a range of indications, but the evidence to guide appropriate use is currently limited. Well-crafted advice is needed to reduce unjustified practice variation, minimize risk of error and harm to patients, and encourage best practices.
In support of mitochondrial replacement therapy
Nature MedicineEli Y Adashi, Arthur L Caplan, Alexander Capron, Audrey R Chapman, Mildred Cho, Ellen Wright Clayton, I Glenn Cohen, Robert Cook-Deegan, Ruth R Faden, Theodore Friedmann, Lawrence O Gostin, Henry T Greely, Josephine Johnston, Eric Juengst, Patricia A King, Lori P Knowles, Anne Drapkin Lyerly, Amy L McGuire, Jonathan D Moreno, Karen Rothenberg, Robert D Truog, LeRoy Walters
2019 A US law aimed at preventing the gene editing of human embryos has had the broader effect of banning an intervention that seeks to prevent mitochondrial diseases. Each year, 700–1,000 children are born in the United States with mitochondrial DNA mutations that cause neuromuscular and developmental diseases for which no fully effective treatments exist.
The law of genetic privacy: applications, implications, and limitations
Journal of Law and the BiosciencesEllen Wright Clayton, Barbara J Evans, James W Hazel, Mark A Rothstein
2019 Recent advances in technology have significantly improved the accuracy of genetic testing and analysis, and substantially reduced its cost, resulting in a dramatic increase in the amount of genetic information generated, analysed, shared, and stored by diverse individuals and entities.
