Sharing aggregate findings from genomics research with stakeholders
Sharing research findings with relevant stakeholders, including study participants, is considered good practice, even when these findings don't impact on the health of individuals. Our human consortial projects produce only aggregated results rather than individual-level findings, yet this research contributes to scientific knowledge and our understanding of malaria. There are important ethical reasons for our partners to share this information with relevant stakeholders in their communities.
Returning aggregated genomic findings:
- Acknowledges that study participants and other stakeholders have a stake in the research
- Promotes trust between participants and researchers
- Helps to educate stakeholders about genomic research and the type of findings possible through these studies
- Encourages researchers to foster strong and long-lasting collaborative relationships with relevant communities
Our ethics team is examining the philosophical justifications for our partners to return aggregated genomics findings, taking into consideration their local contexts and capacity. They're also working with a small number of study sites to develop materials to support dissemination activities, which will be made available to all study sites, and to evaluate the outcomes of these efforts.
- Kerasidou A. Sharing the knowledge: sharing aggregate genomic findings with research participants in developing countries. Dev World Bioeth. 2015 Dec;15(3):267-74. doi: 10.1111/dewb.12071. Epub 2014 Oct 8.