Best Practices For Returning Genomics Research Results to Participants, With a Special Focus on Marginalized Populations

Abstract

By Grace Miller, Biological Sciences

Advisor: Kathleen Grogan

Presentation ID: 82

Abstract: Human genomics research depends upon the trust and voluntary participation of its subjects, yet rarely do participants later hear from researchers about even the most general research findings. This lack of communication about study findings occurs in spite of the majority of participants and researchers supporting the return of research results to participants. Furthermore, when study participants are members of a marginalized group, this lack of communication can further damage trust in science and compound societal marginalization. The process of returning genomics results is hindered by multiple barriers, which can differ in part based on the type of genomic result, but the difficulty of overcoming these barriers must be balanced with the harm of not following-up with the community. Our review will discuss the best practices for returning genomic research results to participants, particularly those from marginalized populations, in ways that minimize the potential for miscommunication and emphasize the importance of a strong researcher/participant relationship. Incorporating these best practices would create a more equitable way of doing research and would empower the communities that are so vital for this research.