Synapse
⌘+K
Synapse
PulseExploreClubsResearchersJournals
Instagram
HomeClubsExplore
June 20, 2026BMC Medical EthicsOpen Access

Decolonizing genomic data ownership: a qualitative study of legal practices and access in Uganda

View Full Paper
Ask AI
Bookmark
Share

Authors

DEDeborah Ekusai‐SebattaInfectious Diseases InstituteSSShenuka SinghUniversity of KwaZulu-NatalJOJessica OgaAfrican Bible University

Discussion

Loading...

Member takes

Overview

Qualitative study explores legal practices and data ownership issues in Uganda, suggesting decolonized approaches.

Key Points

  • This study aims to understand the legal practices surrounding genomic data ownership and access in Uganda, emphasizing the impact of colonial power dynamics.
  • Conducted qualitative phenomenological study with 49 key informant interviews and 4 focus group discussions
  • Engaged genomic researchers, ethics committee members, lawyers, community advisory board members, and national regulators
  • Utilized thematic analysis to identify key concerns regarding data ownership and access
  • Identified six key concerns, including inadequate regulatory frameworks and unclear data ownership
  • Participants expressed a perception that Global North collaborators owned the data, leading to erosion of community trust
  • Calls for co-ownership and development of benefit-sharing frameworks to address inequalities

Cite This Study

Ekusai‐Sebatta et al. (2026) studied this question.

synapsesocial.com/papers/6a362f11db0793dc1a5369c5https://doi.org/10.1186/s12910-026-01517-0
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. 1From ownership to custodianship: rethinking human biospecimens data governance in the Chinese context2025
  2. 2Standards for Reporting Qualitative Research2014 · 12,516 citations
  3. 3Ethical, Legal, and Social Issues (ELSI) of Responsible Data Sharing Involving Children in Genomics: A Systematic Literature Review of Reasons2020 · 20 citations
  4. 4Decolonising Research for Justice: Ethical Imperatives and Practical Applications2024 · 23 citations
  5. 5Global Health Equity through Decolonizing Health Research Ethics in Africa: Leveraging Kwame Nkrumah’s Analysis of Neocolonialism2025 · 1 citations