'Cool! and creepy': engaging with college student stakeholders in Michigan's biobank

Abstract

Large population biobanks, important resources for genomic research, also present ethical challenges. The Michigan BioTrust for Health makes dried bloodspots (DBS) leftover from newborn screening, including ~4.5 million collected before 2010 without written consent, available for health research. Absent prospectively gathered consent and/or current engagement with 18- to 29-year olds, little is known about opinions and beliefs from this age group about use of the bloodspots for research. We engaged 2,101 students-BioTrust participants and their peers-at information booths at 20 college campuses across the state to educate youth about the BioTrust and gather information about consent preferences and about hopes and concerns about this public health program. We surveyed student stakeholder DBS research consent preferences and fielded a "postengagement" survey to gauge the attitudes of participants and to evaluate the campus engagement. The most prevalent themes in open-ended comments were support for biobank research and concern that Michiganders are not aware of their participation. While 78 % of students said they would, if asked, opt in to the BioTrust, half of these preferred to be contacted each time a researcher sought to use their DBS. Students reported great interest in the topic and strong likelihood to share what they had learned. BioTrust participants are interested in learning about their role in an initiative whose goals they widely support. Public engagement is particularly important to biobank participants who, absent traditional consent practices, are unaware of their participation. Health-fair style engagements were effective for targeting college-aged stakeholders, communicating complex messages, and likely increasing knowledge. Retrospective biobanks and biobanks that collect proxy consent need policies to respect those who would opt out and will need resources to educate participants and conduct community outreach that is a safeguard to public trust.

Fig. 1

Event locations and numbers engaged: Campus engagements raising awareness about Michigan’s biobank among college-aged participants (listed chronologically) reached 2,101 students. Outreach was conducted in the spring and fall of 2012, and 20 colleges were selected to achieve broad geographic and demographic coverage of the state

Fig. 2

Consent survey: College-aged, BioTrust stakeholders were asked whether, if asked, they would consent to participate in Michigan’s biobank. Most (78 %) of the 856 college students responding said they would opt in, but half of these said they would want to be asked to grant permission each time a researcher sought to use their DBS. Twelve percent said they would opt out and 11 % said they did not care about this issue

Fig. 3

Event assessment: among students responding to our postengagement survey (N = 94), 90 to 98 % affirmed (“somewhat” or “very” much) that: they were interested in the information presented; they would likely share what they learned with others; they felt informed about Michigan’s biobank after meeting us on campus, and they thought the campus events were an “effective way of informing people about the Michigan Biobank”

Fig. 4

Student uptake: Participants responding to our postengagement survey (N = 94) generally answered knowledge questions about the information that we presented correctly (ranging from 77 to 94 % correct)