Evidence map›Paper›PMID 26479558›Full record

ArticleThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics2015

Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research-Clinical Divide.

Susan M Wolf, Wylie Burke, Barbara A Koenig

Abstract read
PubMed Full text at PMC Publisher
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. Cited by 31 papers.

0numbers the graph read from it
0cells of the map it votes in
31citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

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.

2 · The registry

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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

31 citing papers in PubMed.

  1. Genomic Data Governance Challenges Between Research and Clinical Care: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2026
    Article
  2. Article
  3. Review
  4. Review
  5. Functional genomics of OCTN2 variants informs protein-specific variant effect predictor for Carnitine Transporter Deficiency.Proceedings of the National Academy of Sciences of the United States of America · 2022
    Article
  6. Article
  7. Article
  8. Article
  9. Attitudes toward genomics and precision medicine.Journal of clinical and translational science · 2021
    Article
  10. Article
  11. Article
  12. 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 · 2020
    Article
  13. Article
  14. Article
  15. Article
  16. Article
  17. Optimizing Precision Medicine for Public Health.Frontiers in public health · 2019
    Review
  18. Article
  19. Navigating the research-clinical interface in genomic medicine: analysis from the CSER Consortium.Genetics in medicine : official journal of the American College of Medical Genetics · 2018
    Article
  20. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

3 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.
Wylie BurkeProfessor of Bioethics and Humanities at the University of Washington and Adjunct Professor of Medicine (Medical Genetics). She is the Director of the University of Washington's Center for Genomics and Healthcare Equality, which has been funded by the National Human Genome Research Institute as a Center of Excellence in ELSI Research (CEER).
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 that focuses 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.

Funding

Genomic Health Care and the Medically UnderservedP50HG003374 · NHGRI · UNIVERSITY OF WASHINGTON · PI BURKE, WYLIE G. · 2004 to 2014
$9.8M
Disclosing Genomic Incidental Findings in a Cancer Biobank: An ELSI ExperimentR01CA154517 · NCI · MAYO CLINIC ROCHESTER · PI KOENIG, BARBARA A., PETERSEN, GLORIA M. · 2011 to 2015
$2.7M
Center for Transdisciplinary ELSI Research in Translational GenomicsP20HG007243 · NHGRI · KAISER FOUNDATION RESEARCH INSTITUTE · PI HARRIS-WAI, JULIE NOEL, KOENIG, BARBARA A. · 2013 to 2016
$958k
NCI NIH HHS 1-R01-CA154517NCI NIH HHS R01 CA154517NHGRI NIH HHS P20 HG007243NHGRI NIH HHS P20-HG007243NHGRI NIH HHS P50 HG003374NHGRI NIH HHS P50-HG003374
6 · The paper itself

Abstract

Both bioethics and law have governed human genomics by distinguishing research from clinical practice. Yet the rise of translational genomics now makes this traditional dichotomy inadequate. This paper pioneers a new approach to the ethics of translational genomics. It maps the full range of ethical approaches needed, proposes a "layered" approach to determining the ethics framework for projects combining research and clinical care, and clarifies the key role that return of results can play in advancing translation.

Indexed as

GenomicsHumansTranslational Research, Biomedical

Identifiers

PMID26479558
PMCPMC4620583

What OpenQuestion holds

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Registered trials

None linked

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.