Synapse
⌘+K
Synapse
PulseExploreClubsResearchersJournals
Instagram
HomeClubsExplore
September 10, 2025Research EthicsOpen Access

“It just feels morally not right to Sell the data”: Ethical and social perspectives on human genomic data sharing in Uganda—A phenomenological qualitative study

View Full Paper
Ask AI
Bookmark
Share

Authors

DEDeborah Ekusai‐SebattaDKDavid KyaddondoDKDavid Kaawa‐Mafigiri

Discussion

Loading...

Member takes

Overview

Qualitative research explores ethical concerns and equity issues in genomic data sharing in Uganda, highlighting important perspectives.

Key Points

  • Stakeholders emphasize the importance of ethical considerations in genomic data sharing, highlighting privacy and equity.
  • Thematic analysis revealed significant concerns regarding informed consent and third-party data access among participants.
  • Qualitative interviews were conducted with 86 stakeholders from various research institutions and ethics committees in Uganda.
  • The study calls for culturally contextualized consent and robust data governance to protect participant rights in genomic research.

Cite This Study

Ekusai‐Sebatta et al. (2025) studied this question.

synapsesocial.com/papers/68c1aab854b1d3bfb60e2c16https://doi.org/10.1177/17470161251361575
View Full Paper
Ask AI
Bookmark
Share

Also Consider

Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context:

  1. 1Decolonizing genomic data ownership: a qualitative study of legal practices and access in Uganda2026
  2. 2<i>“Should researchers return individual pharmacogenomics results to participants?</i> ” A descriptive qualitative study on stakeholder perspectives involved in HIV/AIDS research and treatment in Uganda2025 · 1 citations
  3. 3Informed consent in genetic and genomic studies in Sub-Saharan Africa: a systematic review of bioethical issues2025 · 3 citations
  4. 4Ethical Challenges of Obtaining Informed Consent: Qualitative Research on the Perspectives of Tuberculosis Patients Participating in Human Genomic Research in Ethiopia2026
  5. 5Community Engagement conduct for Genetics and Genomics Research: a qualitative study of the experiences and perspectives of researchers, REC members, and research communities, in Uganda2024 · 1 citations