Evidence map›Paper›PMID 39987106›Full record

ArticleClinical epigenetics2025

Black community member perceptions and ethics recommendations on epigenomic research.

Courtney Berrios, Tammy Basey, Andrea Bradley-Ewing, Stacey Daniels-Young, Daysha Lewis, Keith Feldman, Mary E Moffatt, Tomi Pastinen, Elin Grundberg

Abstract read
In one paragraph

Article in Clinical epigenetics, 2025. 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
–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

1 citing paper in PubMed.

  1. Article
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

9 authors.

Courtney BerriosGenomic Medicine Center, Department of Pediatrics, Children's Mercy Kansas City, 2401 Gillham Rd, Kansas City, MO, 64108, USA. cdberrios@cmh.edu.
Tammy BaseyDivision of Emergency Medicine, Department of Pediatrics, Children's Mercy Kansas City, Kansas City, USA.
Andrea Bradley-EwingHealth Services and Outcomes Research, Department of Pediatrics, Children's Mercy Kansas City, Kansas City, USA.
Stacey Daniels-YoungCommunity Advisory Board, Children's Mercy Research Institute, Kansas City, USA.
Daysha LewisCommunity Advisory Board, Children's Mercy Research Institute, Kansas City, USA.
Keith FeldmanDepartment of Pediatrics, University of Missouri Kansas City School of Medicine, Kansas City, USA.
Mary E MoffattDepartment of Pediatrics, University of Missouri Kansas City School of Medicine, Kansas City, USA.
Tomi PastinenGenomic Medicine Center, Department of Pediatrics, Children's Mercy Kansas City, 2401 Gillham Rd, Kansas City, MO, 64108, USA.
Elin GrundbergGenomic Medicine Center, Department of Pediatrics, Children's Mercy Kansas City, 2401 Gillham Rd, Kansas City, MO, 64108, USA.

Funding

Understanding Mechanisms Underlying Chronic Stress-Induced Asthma in Children by Population and Single-Cell Epigenomics ApproachesR01MD015409 · NIMHD · CHILDREN'S MERCY HOSP (KANSAS CITY, MO) · PI GRUNDBERG, ELIN · 2020 to 2024
$3.6M
NIMHD NIH HHS R01 MD015409NIMHD NIH HHS R01MD015409NIMHD NIH HHS R01MD015409-03S2
6 · The paper itself

Abstract

backgroundSocial epigenomics research investigates links between social experiences and epigenetic modifications, which may ultimately impact health. Such research holds promise for precision medicine and addressing health disparities based on social conditions, but also brings unique ethical challenges. The linking of social experiences to biological changes risks pathologizing experiences, potentially leading individuals and communities to be seen as 'damaged.' This stigmatization or stereotyping based on experiences also risks placing disproportionate personal responsibility for health. These risks are likely to be amplified in historically marginalized communities already facing discrimination. It is therefore essential to engage members of historically marginalized communities to explore attitudes about social epigenomics research. This study focuses on the Black and African American (B/AA) population in the USA, studying perceptions of social epigenomic research participants, research decliners, and broadly representative community members to identify perceived benefits and risks of social epigenomic research as well as strategies to maximize benefits and lower risks for both participants and communities.

resultsBoth research participants and community members perceived potential benefit of social epigenomic research for the B/AA population. While most research participants did not perceive research related risks, community members identified risks both specific to social epigenomic research and more generalized to medical research. Several of the risks identified, and a belief that the likelihood of harms was greater than the likelihood of benefits, were based on past research injustices to B/AA research participants and mistrust in the medical and research enterprise. However, community members provided concrete strategies for maximizing the chance of benefits and lowering risk of harms including acknowledging and addressing biases and past injustices, ensuring transparency and understanding, positive framing of research, thorough research and dissemination, and engaging with communities before, throughout, and beyond the research process.

conclusionsWhile B/AA community members identified risk of both individual and community harm from social epigenomic research, they also perceived potential health benefits for the B/AA community. Through concerted efforts to apply community recommendations to lower risks and enhance benefits, researchers can conduct ethical and valid epigenomic research that aims to address health disparities with historically marginalized communities.

Indexed as

Black or African AmericanEpigenomicsAdultFemaleHumansMaleMiddle AgedUnited StatesBlack or African AmericanCommunityEpigeneticsEthicsSocial experiences

Identifiers

PMID39987106
PMCPMC11847333

What OpenQuestion holds

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Registered trials

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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.