Evidence map›Paper›PMID 38166828›Full record

ArticleBMC medical ethics2024

Community engagement in genetics and genomics research: a qualitative study of the perspectives of genetics and genomics researchers in Uganda.

Harriet Nankya, Edward Wamala, Vincent Pius Alibu, John Barugahare

Open access · goldAbstract read
In one paragraph

Article in BMC medical ethics, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
2.7field-weighted citation impact, top 11% 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

6 citing papers in PubMed, 5 citations in OpenAlex.

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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

4 authors at 1 institution in 1 country.

Harriet NankyaDepartment of Philosophy, College of Humanities and Social Sciences, Makerere University, P. O Box 7062, Kampala, Uganda. harrietana@gmail.com.
Edward WamalaDepartment of Philosophy, College of Humanities and Social Sciences, Makerere University, P. O Box 7062, Kampala, Uganda.
Vincent Pius AlibuDepartment of Biochemistry and Sports Science, College of Natural Sciences, Makerere University, P. O Box 7062, Kampala, Uganda.
John BarugahareDepartment of Philosophy, College of Humanities and Social Sciences, Makerere University, P. O Box 7062, Kampala, Uganda.
Makerere University · UG

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundGenerally, there is unanimity about the value of community engagement in health-related research. There is also a growing tendency to view genetics and genomics research (GGR) as a special category of research, the conduct of which including community engagement (CE) as needing additional caution. One of the motivations of this study was to establish how differently if at all, we should think about CE in GGR.

aimTo assess the perspectives of genetics and genomics researchers in Uganda on CE in GGR.

methodA cross-sectional qualitative study was conducted at Makerere University and Uganda Virus Research Institute. Twenty-five individuals participated, the majority being male (sixteen). Participants included nineteen genetics and genomics researchers (researchers and research coordinators), two CE officers, three nurses and one nursing counsellor. Data were collected using in-depth interviews and analyzed in a thematic manner using NVivo version 12 Plus. STUDY

findingsThirteen of the respondents had conducted CE in their GGR in either a geographical and disease-specific community. Some respondents said CE principles are the same and there is no need for special consideration for CE in GGR. Others gave ethical issues in GGR that require special consideration for CE in such research and these were categorized into six themes: GGR is new to communities, Difficulty in communicating GGR by the researchers, Genes are shared in communities, Cultural sensitivities against GGR, Community attitude toward GGR, Some GGR studies take long to end, and Negotiation of research benefits. Special considerations for CE when conducting GGR were suggested and categorized into seven themes: creating awareness of GGR in communities, obtaining both community acceptance and individual consent, CE team composition, involve communities in solving GGR challenges, prolong CE in some GGR, develop guidelines for CE in GGR, and legal considerations on GGR.

conclusionGGR was characterized by special issues that require special CE considerations for such research.

Indexed as

Genetic ResearchGenomicsCross-Sectional StudiesFemaleHumansMaleQualitative ResearchUgandaCommunity EngagementExperiencesGenetics and genomics researchPerspectivesResearchersUganda

Identifiers

PMID38166828
PMCPMC10763360
OpenAlexW4390496543

What OpenQuestion holds

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LicenceCC BY
Read underepoch 390

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.