Evidence map›Paper›PMID 42139596›Full record

ArticleDeveloping world bioethics2026

Ethical Challenges of Obtaining Informed Consent: Qualitative Research on the Perspectives of Tuberculosis Patients Participating in Human Genomic Research in Ethiopia.

Herani S Dembu, Polly J Price, Jessica Sales, Liya Wassie

Abstract read
In one paragraph

Article in Developing world bioethics, 2026. 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

4 authors.

Herani S DembuLegal Executive Office, Armauer Hansen Research Institute, Addis Ababa, Ethiopia.ORCID https://orcid.org/0000-0001-6700-8785
Polly J PriceSchool of Law and Global Health, Emory University, Atlanta, GA, USA.
Jessica SalesDepartment of Behavioral, Social, and Health Education Sciences, Rollins School of Public Health, Emory University, Atlanta, GA, USA.ORCID https://orcid.org/0000-0002-1571-8192
Liya WassieCommunicable and Non-communicable Disease Research Unit, Immunology Division, Armauer Hansen Research Institute, Addis Ababa, Ethiopia.

Funding

Emory/Georgia TB Research Advancement Center (TRAC)P30AI168386 · NIAID · EMORY UNIVERSITY · PI Jeffrey M Collins · 2022 to 2026
$5.8M
Emory-Georgia TB Research Training ProgramD43TW007124 · FIC · EMORY UNIVERSITY · PI HENRY M BLUMBERG, Nestani Tukvadze · 2004 to 2026
$4.6M
Ethiopia-Emory TB Research Training ProgramD43TW009127 · FIC · EMORY UNIVERSITY · PI HENRY M BLUMBERG, Kidist Bobosha · 2013 to 2026
$3.4M
FIC NIH HHS D43 TW007124FIC NIH HHS D43 TW009127NIAID NIH HHS P30 AI168386NIH HHS D43TW009127
6 · The paper itself

Abstract

The use of human genetic variation to comprehend complex diseases has also introduced several ethical, legal, and societal issues (ELSI). Despite the important contribution of Human Genome Research (HGR), full comprehension of these issues by all its stakeholders remains challenging. This research focused on exploring the understanding of research participants on the informed consent process of HGR. Nineteen Ethiopian TB patients, who participated in genomics research, were purposely selected for in-depth interviews. Their recorded responses were transcribed into text-based versions and analyzed thematically using MAXQDA Analysis Software. The patterns in the informed consent process showed the following themes: Therapeutic misconception, Limited clarity on perceived benefit, Partial understanding of third-party use, Addressed suspicion or concerns, Mixed feelings about sample and data extraction, Concerns about sample governance, Variations in information and understanding, Barriers and facilitators to comprehension, and Volunteerism and influencing factors. The findings incorporated both the strengths and challenges of the consenting process of a genomic study, while informing the need for ethical improvements.

Indexed as

Genomic DataHuman Genomic ResearchInformed Consent

Identifiers

PMID42139596
PMCPMC13215234

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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.