Evidence map›Paper›PMID 26305750›Full record

ArticleThe American journal of bioethics : AJOB2015

Broad Consent for Research With Biological Samples: Workshop Conclusions.

Christine Grady, Lisa Eckstein, Ben Berkman, Dan Brock, Robert Cook-Deegan, Stephanie M Fullerton, Hank Greely, Mats G Hansson, Sara Hull, Scott Kim and 6 more

Abstract read
In one paragraph

Article in The American journal of bioethics : AJOB, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 145 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
145citing 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

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

  1. Pooled it
  2. Expanding the boundaries of previously obtained informed consent in research: Views from participants in the Personalised Risk-based Mammascreening study.Health expectations : an international journal of public participation in health care and health policy · 2023
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85 more citing papers are in PubMed but not listed here.

4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

16 authors.

Christine Gradya National Institutes of Health Clinical Center.
Lisa Eckstein
Ben Berkman
Dan Brock
Robert Cook-Deegan
Stephanie M Fullerton
Hank Greely
Mats G Hansson
Sara Hull
Scott Kim
Bernie Lo
Rebecca Pentz
Laura Rodriguez
Carol Weil
Benjamin S Wilfond
David Wendler

Funding

NHGRI/DIR Bioethics CoreZIDHG200347 · NHGRI · NATIONAL HUMAN GENOME RESEARCH INSTITUTE · PI BERKMAN, BENJAMIN · 2010 to 2025
$15.5M
Intramural NIH HHS Z99 CL999999
6 · The paper itself

Abstract

Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health (NIH) Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and timely topic.

Indexed as

CommunicationPersonal AutonomyTissue DonorsBiological Specimen BanksBiomedical ResearchCongresses as TopicEthical AnalysisEthics, ResearchHumansInformed ConsentNational Institutes of Health (U.S.)United Statesbiomedical researchinformed consentKeywords:regulatory issuesresearch ethics

Identifiers

PMID26305750
PMCPMC4791589

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.