Evidence map›Paper›PMID 26479557›Full record

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

Patients' Choices for Return of Exome Sequencing Results to Relatives in the Event of Their Death.

Laura M Amendola, Martha Horike-Pyne, Susan B Trinidad, Stephanie M Fullerton, Barbara J Evans, Wylie Burke, Gail P Jarvik

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 15 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
15citing papers in PubMed, 1 pooled it
–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

15 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Review
  3. Article
  4. Article
  5. Article
  6. Review
  7. Article
  8. Article
  9. Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2018
    Article
  10. Traceback: A Proposed Framework to Increase Identification and Genetic Counseling of BRCA1 and BRCA2 Mutation Carriers Through Family-Based Outreach.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2017
    Article
  11. Article
  12. Review
  13. Article
  14. Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015
    Article
  15. 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

7 authors.

Laura M AmendolaClinical and research genetic counselor in the University of Washington, Division of Medical Genetics. Ms. Amendola received her M.S. in Genetic Counseling in Houston, Texas at the University of Texas, Graduate School of Biomedical Sciences.
Martha Horike-PyneResearch Coordinator in the Division of Medical Genetics at the University of Washington, Seattle. She received her M.P.H. at the University of Massachusetts, Amherst, and is a scientist board member for two Institutional Review Boards (IRBs) in Seattle.
Susan B TrinidadResearch scientist in the Department of Bioethics and Humanities at the University of Washington. She holds a master's degree from the Interdisciplinary Program in Health and Humanities at Michigan State University.
Stephanie M FullertonAssociate Professor of Bioethics and Humanities at the University of Washington and Adjunct Associate Professor of Epidemiology and Genome Sciences. She completed a Ph.D. in Human Population Genetics at the University of Oxford, U.K., and a postdoctoral fellowship in the Ethical, Legal, and Social Implications (ELSI) of genetic research at the Pennsylvania State University.
Barbara J EvansProfessor of Law and holds the George Butler Research professorship at University of Houston Law Center, where she is the Director of the Center for Biotechnology & Law. She earned her Ph.D. at Stanford University and J.D. at Yale Law School.
Wylie BurkeProfessor of Bioethics and Humanities at the University of Washington and Adjunct Professor of Medicine (Medical Genetics). She completed a Ph.D. in Genetics and an M.D. at the University of Washington where she also trained in Internal Medicine.
Gail P JarvikHead of the Division of Medical Genetics and holds the Arno G. Motulsky Chair of Medicine at the University of Washington, Seattle, where she is a Professor of Medicine (Medical Genetics) and Genome Sciences. She received her Ph.D. in Human Genetics at the University of Michigan and her M.D. at the University of Iowa in the Medical Scientists Training Program. She completed her residency in Internal Medicine at the Hospital of the University of Pennsylvania and her fellowship in Medical Genetics at the University of Washington.

Funding

Clinical sequencing in cancer: Clinical ethical and technological studiesU01HG006507 · NHGRI · UNIVERSITY OF WASHINGTON · PI JARVIK, GAIL PAIRITZ · 2012 to 2016
$10.6M
Genomic Health Care and the Medically UnderservedP50HG003374 · NHGRI · UNIVERSITY OF WASHINGTON · PI BURKE, WYLIE G. · 2004 to 2014
$9.8M
Genetic Discovery and Application in a Clinical Setting Continuing a PartnershipU01HG006375 · NHGRI · KAISER FOUNDATION HEALTH PLAN OF WASHINGTON · PI JARVIK, GAIL PAIRITZ, LARSON, ERIC B · 2011 to 2014
$4.1M
CSER RoRC Centralized Support Coordinating CenterU01HG007307 · NHGRI · UNIVERSITY OF WASHINGTON · PI BURKE, WYLIE G., JARVIK, GAIL PAIRITZ · 2013 to 2016
$3.6M
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
NCI NIH HHS R01 CA154517NCI NIH HHS R01CA154517NHGRI NIH HHS P50 HG003374NHGRI NIH HHS U01 HG006375NHGRI NIH HHS U01HG006375NHGRI NIH HHS U01 HG006507NHGRI NIH HHS U01HG006507NHGRI NIH HHS U01 HG007307NHGRI NIH HHS U01HG007307
6 · The paper itself

Abstract

The informed consent process for genetic testing does not commonly address preferences regarding disclosure of results in the event of the patient's death. Adults being tested for familial colorectal cancer were asked whether they want their exome sequencing results disclosed to another person in the event of their death prior to receiving the results. Of 78 participants, 92% designated an individual and 8% declined to. Further research will help refine practices for informed consent.

Indexed as

DeathGenomicsInformed ConsentSequence AnalysisAdultAgedAged, 80 and overColorectal NeoplasmsDisclosureExomeFemaleHumansMaleMiddle AgedPatient PreferenceYoung Adult

Identifiers

PMID26479557
PMCPMC4617192

What OpenQuestion holds

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Registered trials

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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.