Evidence map›Paper›PMID 35802790›Full record

ArticleEthics & human research2022

Perspectives from a Predominantly African American Community about Biobank Research and a Biobank Consent Form.

Laura K Sedig, E Hill De Loney, Sarah B Bailey, Kayte Spector-Bagdady, Bianca Ghita, Lydia Koh Krienke, Raymond Hutchinson

Erratum issuedOpen access · greenAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Ethics & human research, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed
0.6field-weighted citation impact, top 32% 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

2 citing papers in PubMed, 3 citations in OpenAlex.

  1. Article
  2. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

7 authors at 5 institutions in 1 country.

Laura K SedigClinical assistant professor of pediatrics at the University of Michigan Medical School.
E Hill De LoneyMichigan Institute for Clinical and Health Research Community Advisory Board member at the University of Michigan, the director of the Flint Odyssey House, Inc., and the Health Awareness Center, and the executive director of Community-Based Organization Partners.
Sarah B BaileyCommunity colead with the Michigan Institute for Clinical and Health Research at the University of Michigan, the chief executive officer of Bridges Into the Future, Inc., and the vice chairperson of the Community-Based Organization Partners.
Kayte Spector-BagdadyAssistant professor of obstetrics and gynecology and the associate director of the Center for Bioethics and Social Sciences in Medicine at the University of Michigan Medical School.
Bianca GhitaMD candidate at Virginia Commonwealth University School of Medicine, class of 2025.
Lydia Koh KrienkePublic health nurse and researcher at Johns Hopkins University.
Raymond HutchinsonProfessor emeritus of pediatrics at the University of Michigan Medical School.
University of Michigan–Ann Arbor · USCommunity Partners · USHealth Awareness (United States) · USJohns Hopkins University · USVirginia Commonwealth University · US

Funding

Michigan Institute for Clinical and Health Research (MICHR)UL1TR002240 · NCATS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI LUMENG, JULIE C, MASHOUR, GEORGE ALEXANDER · 2017 to 2022
$54.9M
Michigan Institute for Clinical and Health Research (MCHR)UL1TR000433 · NCATS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI MASHOUR, GEORGE ALEXANDER · 2012 to 2016
$49.9M
Genetic data partnerships: Enabling equitable access within academic/private data sharing agreementsK01HG010496 · NHGRI · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI SPECTOR-BAGDADY, KAYTE KELLEHER · 2019 to 2023
$875k
NCATS NIH HHS UL1 TR000433NCATS NIH HHS UL1 TR002240NHGRI NIH HHS K01 HG010496
6 · The paper itself

Abstract

Minority populations have been underrepresented in clinical trials, as well as in research biobanks that are created to conduct research with participants' biospecimens and related medical and research data. Biobank research raises issues about informed consent and privacy and the confidentiality of participants' personal data. Our study involved three focus groups of 10 adults each that were conducted in a medically underserved, predominantly African American community to elucidate questions and concerns regarding an institutional biobank. Transcripts from the discussion were qualitatively analyzed. Three main themes that arose from the focus groups included the importance of trust, the importance of the community in research, and suggestions to improve trust. The concerns identified in this study provide a starting point for future research to help research institutions become more trustworthy to the communities they serve.

Indexed as

Biological Specimen BanksConsent FormsAdultBlack or African AmericanHumansInformed ConsentPrivacybenefit sharingbiobanksbiorepositorieshuman research ethicshuman subjects researchinformed consentminority communities in researchtrust in researchtrustworthy research

Identifiers

PMID35802790
PMCPMC9836386
OpenAlexW4284959322

What OpenQuestion holds

Textmetadata
LicenceTDM
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.