Patient awareness and approval for an opt-out genomic biorepository

Per Med. 2013 Jun;10(4):10.2217/pme.13.34. doi: 10.2217/pme.13.34.


Aim: In this study, we sought to assess patient awareness and perceptions of an opt-out biorepository.

Materials & methods: We conducted exit interviews with adult patients and parents of pediatric patients having their blood drawn as part of their clinical care at Vanderbilt University Medical Center (TN, USA).

Results: 32.9% of all patients and parents of pediatric patients report having heard of the opt-out biorepository, while 92.4% approve of this research effort based on a brief description. Awareness that leftover blood could be used for research increased among adult patients during the study period, from 34.3 to 50.0%.

Conclusion: These findings will inform ongoing assessments of the suitability of opt-out and opt-in methods as alternatives to written informed consent for inclusion in a biorepository.

Keywords: exit interviews; human nonsubjects biorepository; iorepository; opt-out research; research ethics.