Evidence map›Paper›PMID 28932961›Full record

ArticleJournal of genetic counseling2018

Enrolling Genomics Research Participants through a Clinical Setting: the Impact of Existing Clinical Relationships on Informed Consent and Expectations for Return of Research Results.

Courtney Berrios, Cynthia A James, Karen Raraigh, Juli Bollinger, Brittney Murray, Crystal Tichnell, Carolyn D Applegate, Amanda L Bergner

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of genetic counseling, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
13citing 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

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

  1. Pooled it
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  7. Review
  8. The culture of research communication in neonatal intensive care units: key stakeholder perspectives.Journal of perinatology : official journal of the California Perinatal Association · 2021
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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

8 authors.

Courtney BerriosMcKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University, 600 North Wolfe Street, Blalock 1008, Baltimore, MD, 21287, USA.
Cynthia A JamesDepartment of Medicine, Division of Cardiology, Johns Hopkins University, Baltimore, MD, USA.
Karen RaraighMcKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University, 600 North Wolfe Street, Blalock 1008, Baltimore, MD, 21287, USA.
Juli BollingerBerman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, USA.
Brittney MurrayDepartment of Medicine, Division of Cardiology, Johns Hopkins University, Baltimore, MD, USA.
Crystal TichnellDepartment of Medicine, Division of Cardiology, Johns Hopkins University, Baltimore, MD, USA.
Carolyn D ApplegateMcKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University, 600 North Wolfe Street, Blalock 1008, Baltimore, MD, 21287, USA.
Amanda L BergnerMcKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University, 600 North Wolfe Street, Blalock 1008, Baltimore, MD, 21287, USA. abergne1@jhmi.edu.

Funding

Baylor-Johns Hopkins Center for Mendelian GeneticsU54HG006542 · NHGRI · JOHNS HOPKINS UNIVERSITY · PI VALLE, DAVID · 2012 to 2015
$15.6M
Baylor-Johns Hopkins Center for Mendelian GeneticsUM1HG006542 · NHGRI · JOHNS HOPKINS UNIVERSITY · PI VALLE, DAVID · 2016 to 2020
$14.5M
NHGRI NIH HHS U54 HG006542NHGRI NIH HHS UM1 HG006542
6 · The paper itself

Abstract

Genetic counselors working in a clinical setting may find themselves recruiting, enrolling, and returning results for genomic research, and existing clinical relationships with study participants may impact these research interactions. We present a qualitative study using semi-structured interviews of participants enrolled in a genome sequencing/exome sequencing (GS/ES) study at the same institution where they receive clinical care. Interviews were coded for motivations to participate and expectations of this research. The interviews revealed common motivations for participation, including altruism and hope for benefit for themselves, family members, and/or others with their condition. Additionally, themes emerged related to unintentional influence based on trust of the clinical provider that recruited them to the study. Participant trust in the enrolling provider at times appeared to extend to the study team to decide which research results to return and to do so in an appropriate format. Participants also based expectations for research results return on previous clinical genetic testing experiences, which may or may not be realistic depending on study design. It is imperative that genetic counselors enrolling patients into research studies be aware of the potential influence of their clinical relationship on potential subjects, be transparent about their role on the study team, and help set expectations about the study process, including results return.

Indexed as

Genetic TestingInformed ConsentTrustBase SequenceDecision MakingFamilyFemaleHumansMaleMotivationQualitative ResearchResearch DesignExpectationsGenetic counselingGenomics researchInfluence of providerMotivationsReturn of results

Identifiers

PMID28932961
PMCPMC7539290

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.