National Survey and Community Advisory Board Development for a Bipolar Disorder Biobank

Abstract

Objectives To engage a national advocacy group and local stakeholders for guidance in developing a bipolar disorder biobank through a web-based survey and a community advisory board. Methods The Depression and Bipolar Support Alliance and the Mayo Clinic Bipolar Biobank conducted a national web-based survey inquiring about interest in participating in a biobank (i.e., giving DNA and clinical information). A community advisory board was convened to guide establishment of the biobank and identify key deliverables from the research project and for the community. Results Among 385 survey respondents, funding source (87%), professional opinion (76%), mental health consumer opinion (79%), and return of research results (91%) were believed to be important for considering study participation. Significantly more patients were willing to participate in a biobank managed by a university or clinic (78.2%) than one managed by government (63.4%) or industry (58.2%; both p < 0.001). The nine-member community advisory board expressed interest in research to help predict the likelihood of bipolar disorder developing in a child of an affected parent and which medications to avoid. The advisory board endorsed the use of a comprehension questionnaire to evaluate participants' understanding of the study (e.g., longevity of DNA specimens, right to remove samples, accessing medical records) as a means to strengthen the informed-consent process. Conclusions These national survey and community advisory data support the merit of establishing a biobank to enable studies of disease risk, provided that health records and research results are adequately protected. The goals of earlier diagnosis and individualized treatment of bipolar disorder were endorsed.

Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research

“…Participants in our study described the importance of a system of checks and balances to prevent any conflicts of interest, whether financial or otherwise, from influencing research oversight. Our findings, like those in other studies, make clear that patients have serious concerns about conflicts of interest, particularly when it comes to research that is managed or funded by government or industry (Frye et al 2015; Kaufman et al 2009; Lemke et al 2010; Spencer et al 2016). However, the participants in our study further clarified that, while these organizations may pose the greatest concerns, no person or committee is immune from biases.…”

Development, implementation, and evaluation of a Community Engagement Advisory Board: Strategies for maximizing success

“…The establishment of Community Advisory Boards (CABS) is a proven strategy for increasing community engagement in research [15, 16]. A CAB is usually a specialized entity assembled in a particular community for a particular research project; CABs tend to have homogeneous membership deriving from the topic of the search study [16–18]. Community Engagement Advisory Boards (CEAB) differ from a CAB in that they advise on more substantive aspects of research including research questions, methodology, interpretation of results, and dissemination [19].…”

Within and beyond the communal turn to informed consent in industry-sponsored pharmacogenetics research: merits and challenges of community advisory boards

“…As a possible solution to embrace more Bcommunal models^ (Widdows 2009), community advisory boards (CABs) have been involved with biobanking and other medical genetic research in order to counter the lapses of individualistic informed consent in such population-based studies (Frye et al 2015;Lemke et al 2010;McCarty et al 2008). CABs invite people from a shared ethnicity, culture, disease, or any other sources of the alliance to come together, attend regular meetings, and discuss the options for empowering individuals' informed consent to the research, for instance, gay HIV-positive individuals in AIDS clinical trials (Strauss et al 2001).…”

“…For example, Frye et al (2015) describe the creation of a CAB, comprised of members with personal or family experience with the bipolar disorders, during the initial phase of establishing a bipolar disorder biobank. Also, researchers may set up partnership with existing communities such as tribal populations.…”