ArticleThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics2015
Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.
2 registry-linked trialsAbstract read
In one paragraph
Article in The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to 2 registered trials, which are not on this map. Cited by 61 papers, 4 of them syntheses that pooled it.
0numbers the graph read from it
0cells of the map it votes in
61citing papers in PubMed, 4 pooled it
–field-weighted citation impact
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
A Randomized Controlled Trial of the Effect of Replacing Sugar-sweetened Beverages With Non-nutritive Sweetened Beverages or Water on Gut Microbiome and Metabolic Outcomes: STOP Sugars NOW Trial
Return of Genomic Results and Aggregate Penetrance in Population-Based Cohorts
Who cites it
61 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Exploring perspectives of interest-holders on the use of health and genomic data from deceased participants in research: An updated systematic review.Journal of genetic counseling · 2026Pooled it
- Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.Journal of genetic counseling · 2023Pooled it
- Stakeholders' perspectives on the post-mortem use of genetic and health-related data for research: a systematic review.European journal of human genetics : EJHG · 2020Pooled it
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- Recommendations for return of secondary genomic findings in observational cohort studies.Nature genetics · 2026Review
- Digital death and posthumous data: a glocal, relational perspective.Frontiers in genetics · 2026Article
- Research participant perceptions of personal utility in disclosure of individual research results from genomic analysis.Journal of community genetics · 2024Article
- Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal.Annual review of genomics and human genetics · 2023Review
- "If relatives inherited the gene, they should inherit the data." Bringing the family into the room where bioethics happens.New genetics and society · 2022Article
- "It's personalized, but it's still bucket based": The promise of personalized medicine vs. the reality of genomic risk stratification in a breast cancer screening trial.New genetics and society · 2022Article
- Feedback of individual genetic and genomics research results: A qualitative study involving grassroots communities in Uganda.PloS one · 2022Article
- Should Health Systems Share Genetic Findings With At-Risk Relatives When the Proband Is Deceased? Interviews With Individuals Diagnosed With Lynch Syndrome.Journal of patient-centered research and reviews · 2022Article
- A genetic researcher's devil's dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?BMC medical ethics · 2021Article
- Perspectives and ethical considerations for return of genetics and genomics research results: a qualitative study of genomics researchers in Uganda.BMC medical ethics · 2021Article
- Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants.Journal of community genetics · 2021Article
- What improves the likelihood of people receiving genetic test results communicating to their families about genetic risk?Patient education and counseling · 2021Article
- Article
- Practices and Attitudes toward Returning Genomic Research Results to Low-Resource Research Participants.Public health genomics · 2021Article
- Perspectives regarding family disclosure of genetic research results in three racial and ethnic minority populations.Journal of community genetics · 2020Article
- Return of Results in Participant-Driven Research: Learning from Transformative Research Models.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
1 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
16 authors.
Susan M WolfMcKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; Professor of Medicine; Faculty member, Center for Bioethics; and Chair, Consortium on Law and Values in Health, Environment & the Life Sciences at the University of Minnesota. She is one of three Principal Investigators on NIH/NCI/NHGRI grant 1-R01-CA154517 on return of genomic results to family members, including after the death of the proband.
Rebecca BranumPolicy director at the Minnesota State College Student Association and previously served as a Research Associate at the University of Minnesota's Consortium on Law and Values in Health, Environment & the Life Sciences.
Barbara A KoenigProfessor of Bioethics and Medical Anthropology based at the Institute for Health & Aging, University of California, San Francisco. Currently, she co-directs a Center of Excellence in ELSI Research focused on translational genomics, co-leads an NCI/NHGRI R01 on return of results in genomic biobanks, and directs the ELSI component of a U19 award focused on newborn screening in an era of whole genome analysis.
Gloria M PetersenProfessor of Epidemiology in the Department of Health Sciences Research at Mayo Clinic College of Medicine in Rochester, Minnesota. She earned her Master's degree in Anthropology from University of Oregon, and Ph.D. in Anthropology from UCLA. She is a Founding Fellow of the American College of Medical Genetics and Genomics.
Susan A BerryProfessor of Pediatrics & Genetics and Division Director for Genetics and Metabolism in the Department of Pediatrics, University of Minnesota. She is a member of the Minnesota Department of Health Newborn Screening Advisory Committee, the Society for Inherited Metabolic Disease, and the American Society of Human Genetics, and is a Fellow of the American Academy of Pediatrics and the American College of Medical Genetics.
Laura M BeskowAssociate Professor at the Duke University School of Medicine and Duke Clinical Research Institute, where her work focuses on ethics and policy issues in biomedical research - particularly human subjects issues in large-scale genomic and translational research. She holds a B.S. in nutrition from Iowa State University, an M.P.H. with a concentration in health law from Boston University, and a Ph.D. in health policy and administration from the University of North Carolina at Chapel Hill.
Mary B DalyMedical oncologist and epidemiologist who chairs the Department of Clinical Genetics at Fox Chase Cancer Center. Her research focuses on defining the best methods of communicating hereditary cancer risk information and on providing risk management strategies and coping skills to family members dealing with an increased risk for cancer.
Conrad V FernandezProfessor and Head of the Division of Pediatric Hematology/Oncology in the Department of Pediatrics, IWK Health Centre, Dalhousie University and is cross-appointed in Bioethics, Medicine, and Postgraduate Studies. He obtained his Hon. B.Sc. at the University of Western Ontario, his medical degree at McMaster University, specialist certification in Pediatrics as a Fellow of the Royal College of Physicians and Surgeons of Canada at Dalhousie University, and completed specialty training in Pediatric Hematology/Oncology at the University of British Columbia.
Robert C GreenMedical geneticist and physician-scientist who directs the G2P Research Program in translational genomics and health outcomes in the Division of Genetics, Brigham and Women's Hospital and Harvard Medical School. He is also Associate Director for Research at Partners Personalized Medicine. Dr. Green leads and co-leads the MedSeq Project and the BabySeq Project respectively, two NIH-funded randomized trials designed to explore the medical, behavioral, and economic implications of integrating genome sequencing into the medical care of adults and newborns.
Bonnie S LeRoyProfessor and Director of the Graduate Program in Genetic Counseling, University of Minnesota. The primary focus of her work is on preparing graduate students to enter the profession of genetic counseling. Her research examines the ethical and social challenges associated with the genetic counseling profession. Prof. LeRoy served as the President of the American Board of Genetic Counseling from 2001-03.
Noralane M LindorProfessor of Medical Genetics in the Department of Health Sciences Research at Mayo Clinic in Scottsdale, Arizona. She received her Bachelor of Arts degree from the University of Minnesota, her doctorate of medicine from Mayo Medical School in Rochester, Minnesota, and did her residencies at Bowman Gray School of Medicine in Winston-Salem, North Carolina, and at Mayo Clinic in Rochester.
P Pearl O'RourkeDirector of Human Research Affairs at Partners HealthCare in Boston, and Associate Professor of Pediatrics at Harvard Medical School. She received her B.A. from Yale University, and completed medical school at Dartmouth Medical School and the University of Minnesota Medical School.
Carmen Radecki BreitkopfAssociate Professor of Health Services Research in the Department of Health Sciences Research at Mayo Clinic College of Medicine in Rochester, Minnesota. She earned her Master's and Doctoral degrees in Psychology from the State University of New York at Albany.
Mark A RothsteinHerbert F. Boehl Chair of Law & Medicine and Director of the Institute for Bioethics, Health Policy & Law, University of Louisville School of Medicine. From 1999-2008, he served as Chair of the Subcommittee on Privacy and Confidentiality of the National Committee on Vital and Health Statistics, the statutory advisory committee to the Secretary of Health and Human Services on health information policy. He is past-President of the American Society of Law, Medicine & Ethics and serves as Public Health Ethics editor for the American Journal of Public Health.
Brian Van NessProfessor of Genetics, Cell Biology and Development at the University of Minnesota. He earned his doctorate in Biochemistry from the University of Minnesota, completed a postdoctoral fellowship at Fox Chase Cancer Center in Philadelphia, and has served as the Department Head and Director of the Institute of Human Genetics at the University of Minnesota.
Benjamin S WilfondDirector of the Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital; Professor and Chief of the Division of Bioethics; Professor, Pulmonary and Sleep Medicine, Department of Pediatrics; and Adjunct Professor, Department of Bioethics and Humanities, University of Washington School of Medicine. He is President of the Association of Bioethics Program Directors, Chair for the Clinical Research Ethics Consultation Working Group for the Clinical and Translational Science Awards program, and a member of the Bioethics and Legal Working Group of the Newborn Screening Translational Research Network.
Funding
Tissue CoreP50CA102701 · NCI · MAYO CLINIC ROCHESTER · PI COUCH, FERGUS JOSEPH · 2004 to 2018
$32.7MPancreatic Cancer Genetic Epidemiology Consortium (PACGENE)R01CA097075 · NCI · MAYO CLINIC ROCHESTER · PI PETERSEN, GLORIA M. · 2002 to 2012
$15.8MIntegration of Whole Genome Sequencing into Clinical MedicineU01HG006500 · NHGRI · BRIGHAM AND WOMEN'S HOSPITAL · PI GREEN, ROBERT C. · 2012 to 2016
$11.5MGenome Sequence-Based Screening for Childhood Risk and Newborn IllnessU19HD077671 · NICHD · BRIGHAM AND WOMEN'S HOSPITAL · PI BEGGS, ALAN H., GREEN, ROBERT C. · 2013 to 2018
$6.1MDisclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI ExperimentR01CA154517 · NCI · MAYO CLINIC ROCHESTER · PI KOENIG, BARBARA A., PETERSEN, GLORIA M. · 2011 to 2015
$2.7MImpact of Direct to Consumer Genetic TestingR01HG005092 · NHGRI · BRIGHAM AND WOMEN'S HOSPITAL · PI GREEN, ROBERT C., ROBERTS, SCOTT · 2010 to 2012
$1.1MCenter for Transdisciplinary ELSI Research in Translational GenomicsP20HG007243 · NHGRI · KAISER FOUNDATION RESEARCH INSTITUTE · PI HARRIS-WAI, JULIE NOEL, KOENIG, BARBARA A. · 2013 to 2016
$958kNCI NIH HHS 1R01CA154517NCI NIH HHS P50 CA102701NCI NIH HHS P50CA102701NCI NIH HHS R01 CA097075NCI NIH HHS R01 CA154517NCI NIH HHS R01CA97075NHGRI NIH HHS P20 HG007243NHGRI NIH HHS P20HG007243NHGRI NIH HHS R01 HG005092NHGRI NIH HHS R01HG005092NHGRI NIH HHS U01 HG006500NHGRI NIH HHS U01HG006500NICHD NIH HHS U19 HD077671NICHD NIH HHS U19HD077671Wellcome Trust
Abstract
Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.
Indexed as
FamilyAdultChildDisclosureGenomicsHumansInformed ConsentResearch Subjects
Identifiers
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Read underepoch 390
Registered trials
NCT03543644ClinicalTrials.gov
NCT04196374ClinicalTrials.gov
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.