Evidence map›Paper›PMID 24616381›Full record

ArticleAmerican journal of medical genetics. Part C, Seminars in medical genetics2014

Return of results: ethical and legal distinctions between research and clinical care.

Wylie Burke, Barbara J Evans, Gail P Jarvik

Registry-linked trialOpen access · greenAbstract read
In one paragraph

Article in American journal of medical genetics. Part C, Seminars in medical genetics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04196374 (Return of Genomic Results and Aggregate Penetrance in Population-Based Cohorts), which is not on this map. Cited by 65 papers.

0numbers the graph read from it
0cells of the map it votes in
65citing papers in PubMed
14.8field-weighted citation impact, top 1% of its field
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.

NCT04196374 nacompletednot on this mapstarted 2021, after this paper: background citation

Return of Genomic Results and Aggregate Penetrance in Population-Based Cohorts

TypeinterventionalSponsorBrigham and Women's HospitalRan2021 to 2025Enrolled7,603ConditionsSeemingly Healthy, Genetic Predisposition to DiseaseArmsGenomic Sequencing
3 · Its place in the literature

Who cites it

65 citing papers in PubMed, 115 citations in OpenAlex.

  1. Trial
  2. Trial
  3. Article
  4. Article
  5. Article
  6. Article
  7. Article
  8. Navigating the challenges of NT-proBNP result disclosure in clinical research.Journal of clinical and translational science · 2025
    Article
  9. Article
  10. Article
  11. Persuasive Appeals in Genetic Biobank Recruitment Campaigns: Social and Ethical Implications.Journal of empirical research on human research ethics : JERHRE · 2023
    Article
  12. Review
  13. Article
  14. Article
  15. Article
  16. Article
  17. Article
  18. Article
  19. Article
  20. Article

5 more citing papers are in PubMed but not listed here.

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.

Wylie Burke
Barbara J Evans
Gail P Jarvik

Funding

Clinical sequencing in cancer: Clinical ethical and technological studiesU01HG006507 · NHGRI · UNIVERSITY OF WASHINGTON · PI JARVIK, GAIL PAIRITZ · 2012 to 2016
$10.6M
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
NHGRI NIH HHS U01 HG006375NHGRI NIH HHS U01 HG006507NHGRI NIH HHS U01HG006507NHGRI NIH HHS U01 HG007307NHGRI NIH HHS U01HG007307
6 · The paper itself

Abstract

The return of individual results to research participants has been vigorously debated. Consensus statements indicate that researchers and bioethicists consider the return of research results most appropriate when the findings are clinically relevant. Even when clinical utility is the motivator, however, the return of individual research results is not equivalent to clinical care. There are important differences in the domains of research and medical care, both from a legal standpoint and in terms of the ethical responsibilities of clinicians and researchers. As a corollary, researchers risk promoting a therapeutic misconception if they create quasi-clinical settings for return of clinically relevant research results. Rather, efforts should be focused on clarity in the provision of research results, appropriate caveats and, most important, appropriate referrals when the results may be helpful to consider in medical care.

Indexed as

Ethics, ClinicalEthics, ResearchDisclosureGenetic ResearchHumansResearch SubjectsCLIAgenetic research resultsHIPAAmedical practice

Identifiers

PMID24616381
PMCPMC4078921
OpenAlexW1810503668

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

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.