Evidence map›Paper›PMID 41939732›Full record

ArticleResearch ethics2025

Sylvia Nabukenya, David Kyaddondo, Adelline Twimukye, Catriona Waitt, Erisa S Mwaka

Abstract read
In one paragraph

Article in Research ethics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

5 authors.

Sylvia NabukenyaMakerere University College of Health Sciences, Kampala, Uganda.ORCID 0000-0001-5868-7376
David KyaddondoMakerere University College of Health Sciences, Kampala, Uganda.
Adelline TwimukyeInfectious Diseases Institute, Kampala, Uganda.
Catriona WaittInfectious Diseases Institute, Kampala, Uganda.
Erisa S MwakaMakerere University College of Health Sciences, Kampala, Uganda.ORCID 0000-0003-1672-9608

Funding

Makerere University International Bioethics Research Training ProgramD43TW010892 · FIC · MAKERERE UNIVERSITY COLLEGE OF HEALTH SCIENCES · PI SEWANKAMBO, NELSON K · 2019 to 2023
$1.2M
FIC NIH HHS D43 TW010892Wellcome Trust
6 · The paper itself

Abstract

The return of individual pharmacogenomic research results is increasingly recognized as an ethical obligation, reflecting participants' right to information and researchers' duty of care. However, implementing this in low-resource settings poses significant ethical and logistical challenges. We explored stakeholders' attitudes and challenges to the process of returning individual pharmacogenomics research results in Uganda. Between September 2021 and February 2022, we conducted 54 qualitative interviews. These included five focus group discussions with 30 community representatives across five HIV research institutions, 12 key informant interviews with researchers, and 12 in-depth interviews with ethics committee members. A thematic approach was used to interpret the results. Four themes emerged from this data. These included (i) attitudes towards returning individual pharmacogenomics results to people living with HIV; (ii) social and ethical implications of returning results; (iii) perceived challenges to the return of results; and (iv) proposed recommendations to overcome the challenges. Returning results reflects principles of reciprocity and equity, and is a source of hope to many people living with chronic illnesses. However, stakeholders raised challenges, including low literacy levels and absence of direct translation of genetic terms, which may lead to misinterpretation of the results; depression and anxiety; stigma and discrimination that could result from breach of confidentiality and privacy. Stakeholders highlighted the need to sensitize the public about the role of genes in an individual's body. Returning pharmacogenomic results to vulnerable populations is ethically important, but must be approached with caution due to implications that may extend beyond the individual. Stakeholders emphasized the need for national guidelines and institutional standard operating procedures to ensure results are communicated safely and sensitively.

Indexed as

HIV/AIDSindividual resultsperspectivespharmacogenomicreturnstakeholder

Identifiers

PMID41939732
PMCPMC13045750

What Socratic holds

Textmetadata
LicenceCC BY-NC
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 Socratic graph.