Genomic research participation

Research participants are pivotal stakeholders in genomic medicine, whether as patients with known or suspected genetic disorders, as health system patients whose samples have been retained for research, or as “healthy volunteers” in individual studies or research biobanks. Understanding and incorporating the priorities and values of these participants goes beyond assuring informed consent.

As a pre-doctoral and postdoctoral trainee, much of my research focused on the experiences, understandings, and self-perceptions of genetic/genomic research participants. This area remains understudied, as most studies of research participation focus narrowly on participant knowledge and informed consent, or on the desire for return of results. However, research participants often see their role in broader terms than researchers do, and that role frequently includes bonds of teamwork and reciprocity.

As translational genomic research works to include greater numbers of research participants who are more diverse, the continuing participation and goodwill of these stakeholders is crucial. I am now expanding upon this previous work with preliminary research on the priorities and values of participants in stem cell gene transfer research.