Nothing about us without us: Sharing results with communities that provide genomic data

Area of Science:

• Biomedical research ethics
• Community engagement in science
• Genomic research governance

Background:

• Equitable research relationships necessitate benefit-sharing with study communities.
• Returning study results is a key component of benefit-sharing.
• Practical guidance and institutional policies for result return are currently lacking.

Purpose of the Study:

• To discuss the implementation of returning study results to research participants.
• To address the challenges associated with deciding which results to return and how.
• To provide a framework for result return across diverse research contexts.

Main Methods:

• Literature review on benefit-sharing and result return in research.
• Analysis of ethical considerations in community-based research.
• Case study examples illustrating result return strategies.

Main Results:

• Returning results enhances community trust and engagement.
• Challenges include data complexity, participant understanding, and resource allocation.
• Implementation requires tailored approaches based on geography, study design, and budget.

Conclusions:

• Establishing clear institutional policies is crucial for effective result return.
• Practical guidance is needed to navigate the complexities of sharing research findings.
• Successful result return fosters more equitable and sustainable biomedical research partnerships.