IRB Chairs' Perspectives on Genotype-driven Research Recruitment

Laura M. Beskow, MPH, PhD; Emily E. Namey, MA; Patrick R. Miller, PhD; Daniel K. Nelson, MS; CIP, Alexandra Cooper, PhD


IRB. 2012;34(3):1-10. 

In This Article

Ethical Dilemmas: Weighing the Issues

We concluded our survey by asking directly about the ethical dilemmas involved in genotype-driven research recruitment (Table 2). With regard to whether researchers should be allowed to contact eligible participants in one study about taking part in a second study, we asked chairs to weigh the importance of protecting participants from unwelcome contact versus providing participants the opportunity to hear about more research. Slightly more than half (51%) decided in favor of avoiding unwelcome contact.

With regard to whether participants should be offered their individual genetic results from the first study when contacted about taking part in the second study, more chairs (49%) prioritized avoiding disclosure of unwanted genetic information over avoiding leaving participants uninformed about why they are eligible for the second study (36%).

Finally, in a second dilemma we posed about offering individual genetic results, more chairs (46%) chose avoiding disclosure of genetic information with uncertain clinical utility over promoting participants' autonomy to make their own determinations about the usefulness of the information (39%).