Communicating with Biobank Participants: Preferences for Receiving and Providing Updates to Researchers

Abstract

Background Research biobanks collect biological samples and health information. Previous work shows that biobank participants desire general study updates, but preferences regarding the method or frequency of these communications have not been explored. Thus, we surveyed participants in a long-standing research biobank. Methods Eligible participants were drawn from a study of patients with personal/family history suggestive of Cowden syndrome, a poorly-recognized inherited cancer syndrome. Participants gave blood samples and access to medical records and received individual results but had no other study interactions. The biobank had 3618 participants at sampling. Survey eligibility included age ≥18 years, enrollment within the biobank’s first five years, normal PTEN analysis, and contiguous United States address. Multivariate logistic regression analyses identified predictors of participant interest in internet-based vs. offline methods and methods allowing participant-researcher interaction vs. one-way communication. Independent variables were narrowed by independent Pearson correlations by cutoff p<0.2, with p<0.02 considered significant. Results Surveys were returned from 840/1267 (66%) eligible subjects. Most (97%) wanted study updates with 92% wanting updates at least once a year. Participants preferred paper (66%) or emailed (62%) newsletter methods with 95% selecting one of these. Older, less-educated, and lower-income respondents strongly preferred offline approaches (p<0.001). Most (93%) had no concerns about receiving updates and 97% were willing to provide health updates to researchers. Conclusion Most participants were comfortable receiving and providing updated information. Demographic factors predicted communication preferences. Impact Researchers should make plans for ongoing communication early in study development and funders should support the necessary infrastructure for these efforts.

At a Moment’s Notice: Community Advisory Board Perspectives on Biobank Communication to Supplement Broad Consent

“…These findings reinforce contributor privacy concerns as an important element of biobank communication and governance practices [60][61][62]. CAB members' varying preferences and uncertainty about the use of online tools and their desire for clear messages are also consistent with recent studies on biobank communication [17,63]. Some responses of CAB members could be characterized as a version of the therapeutic misconception.…”

“…In contrast to principled concepts dominant in the bioethics literature, these notifications were not viewed by CAB members primarily in terms of increasing research transparency, but as reflecting a variety of values. Although no systematic review of biobank communication has been reported, some communication efforts by biobanks appear more common, including websites and newsletters [14][15][16][17]. As research obligations to disclose health-related results are ethically debated, the dissemination of both aggregate and individual results is also becoming more common [47][48][49][50][51][52].…”

“…To these combined normative and practical efforts, we add and explore the option of notifying contributors of sample use. We situate such notification in the wide array of communication efforts made by biobanks [14][15][16][17]. Notification can also be understood as a kind of trustbased approach; continuous communication and openness are a way of recognizing that the relationship between the biobank and the contributors is ongoing [18].…”

Improving dissemination of study results: perspectives of individuals with cystic fibrosis

“…For example, if research clinics or networks maintain a website that provides information on completed studies, as is done in this clinic, participants could be notified when relevant information has been uploaded. Similarly, other studies have found that participants would like to receive paper or e-mail newsletter updates (Mester et al, 2015). While such information is available in the clinic where this research was conducted, participants generally did not realize this, indicating that the direct communication provided by a notification, e-mail, or newsletter may be more effective than uploading study results on a website where they may not be accessed.…”

Preferences for multigene panel testing for hereditary breast cancer risk among ethnically diverse BRCA-uninformative families

“…Despite the wide range of electronic and online communication options available for cancer risk communication, our study found a high preference for print communication for both Hispanic and non-Hispanic women. Other research has found that participants in a biobank study preferred to receive yearly updates via convenient, inexpensive methods such as newsletters (Mester et al 2015). Randomized trials have found that print materials can be combined with telephone or in-person counseling to help increase access genetic risk information and services and promote informed decisionmaking (Kinney et al 2014a, b;Steffen et al 2015), but these trials did not include a large proportion of Hispanics or members of other underserved minority groups.…”