Skip to main content

ETHNOS_APP

Home • Search • Journals • List 0

Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV

A qualitative study

Bibliographic Data

ID21787678
AuthorsNabukenya Sylvia, Joseph Ochieng (0000-0003-3861-9098, Makerere University), Ochieng Joseph (Makerere University College of Health Sciences, Uganda), Kaawa-Mafigiri David (Makerere University), Munabi Ian, Janet Nakigudde (0000-0002-6852-1000, Makerere University), Nakigudde Janet (Makerere University College of Health Sciences, Uganda), Nakwagala Frederick Nelson (Mulago Hospital), John Barugahare (0000-0001-6420-4756, Makerere University), Barugahare John (Makerere University College of Humanities and Social Sciences, Uganda), Kwagala Betty, Ibingira Charles (Makerere University), Twimwijukye Adelline (Infectious Diseases Institute), Sewankambo Nelson, Erisa Mwaka (0000-0003-1672-9608, Infectious Diseases Institute, corresponding author)
Year2022
Volume18
Issue3
Pages193-209
Publication date2022-07-01
Open AccessYes
TypeARTICLE
VenueResearch Ethics (JOURNAL)
Journal identifiersISSN: 1747-0161 • E-ISSN: 2047-6094
PublisherSAGE Publications (PUBLISHER • US)
DOI10.1177/17470161221076974
PMID36213304
OpenAlexW4210656473
LanguageEN
Citations received5
References cited39

This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: approaches used to convey information and enhance research participants’ understanding and challenges faced during the consenting process. Several barriers and facilitators for obtaining consent were identified. Innovative and potentially effective consenting strategies were identified in this study that should be studied and independently verified

Alternative medicine · Family medicine · Genotype · Informed consent · Medical education · Pharmacogenetics · Qualitative research · Sociology · Biomedical Ethics and Regulation · Computer Science · Ethics in Clinical Research · Health Systems, Economic Evaluations, Quality of Life · Medicine · Psychology

  • Understanding of Critical Elements of Informed Consent in Genomic Research

    Open Access•Francis Anyaka Amayoa, Frederick Nelson Nakwagala et al.•Journal of Empirical Research on…•2022

  • “Should researchers return individual pharmacogenomics results to participants? ” A descriptive qualitative study on stakeholder perspectives involved in HIV/Aids research and treatment in Uganda

    Open Access•Sylvia Nabukenya, David Kyaddondo et al.•Research Ethics•2026

  • Awareness, experiences and perceptions regarding genetic testing and the return of genetic and genomics results in a hypothetical research context among patients in Uganda

    Open Access•Joseph Ochieng, Betty Kwagala et al.•Journal of Medical Ethics•2024

  • Genetic and Genomic Researchers’ Perspectives on Biological Sample Sharing in Collaborative Research in Uganda

    Open Access•David Kaawa‐mafigiri, Deborah Ekusai‐Sebatta et al.•Journal of Empirical Research on…•2023

  • Understanding of Key Considerations for Effective Community Engagement in Genetics and Genomics Research

    Open Access•Harriet Nankya, Vincent Pius Alibu et al.•Journal of Empirical Research on…•2024

  • Qualitative research in health care

    Open Access•Nicholas Mays•BMJ•2000

  • Implementation of genomics research in Africa

    Open Access•Sally N Adebamowo, Veronica Francis et al.•Global Health Action•2018

  • Culture and Genetic Screening in Africa

    Open Access•Ayodele S Jegede•Developing World Bioethics•2009

  • Collaborative International Research

    Open Access•Aslam Sathar, Amaboo Dhai et al.•Developing World Bioethics•2014

  • Improving Participant Understanding of Informed Consent in an HIV-Prevention Clinical Trial

    Open Access•Amy Corneli, Amy L Corneli et al.•AIDS and Behavior•2011

  • Genomic Literacy and Awareness of Ethical Guidance for Genomic Research in Sub-Saharan Africa

    Open Access•Olubunmi Ogunrin, Funmilola Taiwo et al.•Journal of Empirical Research on…•2018

  • Voluntary Participation and Informed Consent to International Genetic Research

    Patricia A Marshall, Clement A Adebamowo et al.•American Journal of Public Health•2006

  • Using thematic analysis in psychology

    Open Access•Braun, Virginia Braun et al.•Qualitative Research in Psychology•2006

  • Demonstrating Rigor Using Thematic Analysis

    Open Access•Jennifer Fereday, Eimear Muir-Cochrane•International Journal of…•2006

Citations per year1.25
Citation span2022 - 2026 (5)
Highly citedNo

Tools

Open DOIOpen Access
Ethnos_APP • Open Source Project • MIT License • Frontend v2.0.0 • Privacy and Cookies • API Documentation: api.ethnos.app/docs • API Source Code: GitHub • DOI: 10.5281/zenodo.17049435 • Frontend Source Code: GitHub • DOI: 10.5281/zenodo.17050053 • cruz.rio.br • Expectantes Misericordiae