Assessing Decisional Regret Among Biobank Sample Donors

Background: Large biobanks that link biological specimens with specimen donors’ health histories are a critical tool for precision medicine, and many health care institutions have invested significant resources in setting up and building up large collections for this purpose. As biobanks require consented participation from thousands of individual donors, much research has focused on the values and preferences of new and prospective donors who are actively contemplating an invitation to participate in the collection. Few studies, however, have focused on participants’ opinions about their biobank participation in the months and years following enrollment. Methods: We conducted a survey in a large, established biobank and evaluated participants’ levels of decisional regret regarding their decision to enroll in the biobank. Results: We found very low levels of decisional regret among established biobank participants. Multivariable regression analysis found that age, length of time in the biobank, lower educational attainment, inadequate health literacy, and previous invitations to research participation were all significant predictors of elevated regret. Discussion: Among those with elevated regret, several demographic factors may point to elevated likelihood of decisional regret. More research is needed to identify factors associated with long-term satisfaction with biobank participation and with elevated risk of regret and/or withdrawal from the collection.