Evidence map›Paper›PMID 23660530›Full record

ArticleGenetics in medicine : official journal of the American College of Medical Genetics2014

Public preferences regarding informed consent models for participation in population-based genomic research.

Jodyn Platt, Juli Bollinger, Rachel Dvoskin, Sharon L R Kardia, David Kaufman

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 55 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
55citing papers in PubMed, 2 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

55 citing papers in PubMed, 2 syntheses or guidelines pooled it.

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  8. Health Research with Data in a Time of Privacy: Which Information do Patients Want?Journal of empirical research on human research ethics : JERHRE · 2023
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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

5 authors.

Jodyn Platt1] Life Sciences and Society Program, University of Michigan School of Public Health, Ann Arbor, Michigan, USA [2] Department of Health Management and Policy, University of Michigan School of Public Health, Ann Arbor, Michigan, USA.
Juli BollingerGenetics and Public Policy Center, Berman Institute of Bioethics, Johns Hopkins University, Washington, DC, USA.
Rachel DvoskinGenetics and Public Policy Center, Berman Institute of Bioethics, Johns Hopkins University, Washington, DC, USA.
Sharon L R Kardia1] Life Sciences and Society Program, University of Michigan School of Public Health, Ann Arbor, Michigan, USA [2] Department of Epidemiology, University of Michigan School of Public Health, Ann Arbor, Michigan, USA.
David KaufmanGenetics and Public Policy Center, Berman Institute of Bioethics, Johns Hopkins University, Washington, DC, USA.

Funding

Linking Community Engagement Research to Public Health Biobank PracticeR01HD067264 · NICHD · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI KARDIA, SHARON L · 2011 to 2015
$3.0M
Making Every Voice Count: Public Consultation on Genetics, Environment and HealthU01HG004206 · NHGRI · JOHNS HOPKINS UNIVERSITY · PI SCOTT, JOAN · 2006 to 2009
$2.8M
NHGRI NIH HHS 1 U01 HG004206-0NHGRI NIH HHS U01 HG004206NICHD NIH HHS 5-R01-HD-067264-02NICHD NIH HHS R01 HD067264
6 · The paper itself

Abstract

purposeSome large population biobanks that house biospecimens and health information for research seek broad consent from participants, whereas others reconsent for specific new studies. Understanding research participants' attitudes and preferences about broad and narrow consent may improve recruitment, retention, and public support.

methodsAn online survey was conducted among a representative sample of 4,659 US adults to examine relationships between consent preferences and demographic factors, beliefs about privacy and the value of research, and the perceived trustworthiness of researchers.

resultsParticipants preferred broad consent (52%) over study-by-study consent models (48%). Higher preferences for study-by-study consent observed among black non-Hispanic respondents and respondents with lower income and education were explained by differences in the prevalence of one or more beliefs about the study. Respondents with fears about research and those who would feel respected if asked for permission for each research use preferred study-by-study consent. Preference for broad consent was related to the desire not to be bothered with multiple requests and the belief that the study could lead to improved treatments, cures, and lives saved.

conclusionThese data suggest that support for broad consent is contingent on sufficient information about data use. Work with research participants and community leaders to understand, respond to, and influence opinions about a given, ongoing study may improve uptake of broad consent.

Indexed as

Informed ConsentAdultBiological Specimen BanksCohort StudiesData CollectionDemographyGenetic ResearchGenomicsHumansInternetPublic OpinionUnited States

Identifiers

PMID23660530
PMCPMC3904287

What OpenQuestion holds

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Read underepoch 390

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.