Evidence map›Paper›PMID 25340645›Full record

ArticleChest2015

Surrogate receptivity to participation in critical illness genetic research: aligning research oversight and stakeholder concerns.

Bradley D Freeman, Kevin Butler, Dragana Bolcic-Jankovic, Brian R Clarridge, Carie R Kennedy, Jessica LeBlanc, Sara Chandros Hull

Open access · bronzeAbstract readMulticenter Study
In one paragraph

Article in Chest, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
0.6field-weighted citation impact, top 24% 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.

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

1 citing paper in PubMed, 3 citations in OpenAlex.

  1. Observational
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 at 2 institutions in 1 country.

Bradley D FreemanDepartment of Surgery, Washington University School of Medicine, St. Louis, MO. Electronic address: freemanb@wustl.edu.
Kevin ButlerDepartment of Surgery, Washington University School of Medicine, St. Louis, MO.
Dragana Bolcic-JankovicCenter for Survey Research, Boston, MA.
Brian R ClarridgeCenter for Survey Research, Boston, MA.
Carie R KennedyDepartment of Surgery, Washington University School of Medicine, St. Louis, MO.
Jessica LeBlancCenter for Survey Research, Boston, MA.
Sara Chandros HullCenter for Clinical Bioethics, National Institutes of Health, Bethesda, MD.
Washington University in St. Louis · USNational Institutes of Health Clinical Center · US

Funding

Establishing the Ethical Framework for Critical Care GeneticsR01GM080591 · NIGMS · WASHINGTON UNIVERSITY · PI FREEMAN, BRADLEY D · 2008 to 2012
$2.5M
NIGMS NIH HHS GM080591NIGMS NIH HHS R01 GM080591
6 · The paper itself

Abstract

backgroundCollection of genetic biospecimens as part of critical illness investigations is increasingly commonplace. Oversight bodies vary in restrictions imposed on genetic research, introducing inconsistencies in study design, potential for sampling bias, and the possibility of being overly prohibitive of this type of research altogether. We undertook this study to better understand whether restrictions on genetic data collection beyond those governing research on cognitively intact subjects reflect the concerns of surrogates for critically ill patients.

methodsWe analyzed survey data collected from 1,176 patients in nonurgent settings and 437 surrogates representing critically ill adults. Attitudes pertaining to genetic data (familiarity, perceptions, interest in participation, concerns) and demographic information were examined using univariate and multivariate techniques.

resultsWe explored differences among respondents who were receptive (1,333) and nonreceptive (280) to genetic sample collection. Whereas factors positively associated with receptivity to research participation were "complete trust" in health-care providers (OR, 2.091; 95% CI, 1.544-2.833), upper income strata (OR, 2.319; 95% CI, 1.308-4.114), viewing genetic research "very positively" (OR, 3.524; 95% CI, 2.122-5.852), and expressing "no worry at all" regarding disclosure of results (OR, 2.505; 95% CI, 1.436-4.369), black race was negatively associated with research participation (OR, 0.410; 95% CI, 0.288-0.585). We could detect no difference in receptivity to genetic sample collection comparing ambulatory patients and surrogates (OR, 0.738; 95% CI, 0.511-1.066).

conclusionsExpressing trust in health-care providers and viewing genetic research favorably were associated with increased willingness for study enrollment, while concern regarding breach of confidentiality and black race had the opposite effect. Study setting had no bearing on willingness to participate.

Indexed as

Critical IllnessAdultCritical CareFemaleGenetic ResearchGenetic TestingHumansMaleMiddle AgedSurveys and QuestionnairesThird-Party ConsentUnited States

Identifiers

PMID25340645
PMCPMC4388127
OpenAlexW2052574342

What OpenQuestion holds

Textmetadata
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.