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P-064 Perceptions of Patients with Inflammatory Bowel Diseases on Biobanking in the CCFA Partners Cohort

BACKGROUND: The creation of biobanks is underpinned by the belief the use of human biospecimens in research will lead to scientific discoveries that will benefit society. Public surveys and focus groups demonstrate strong support for medical research, yet little is known specifically about beliefs, understanding and perceptions of biobanking among patients with certain chronic disease states, such as inflammatory bowel diseases (IBD). We aimed to further understand perceptions of biobanking in the IBD community through 1) a series of 1:1 interviews with members of the CCFA Partners cohort to understand attitudes related to biobanking and 2) a cross-sectional survey of the CCFA Partners cohort to determine patient preferences and concerns about participation in an IBD specific biobank. METHODS: Participants in CCFA Partners were recruited to participate in a 1:1 telephone interview on their perceptions of the risks and benefits of contributing specimens for research, as well as various ethical and legal considerations of biobanking. The results of these interviews informed the development of a cross-sectional instrument to gauge the cohort’s perceptions of biobanking. Bivariate statistics were used to compare willingness to participate in biobanking and other factors by disease type, gender, age, and severity of disease. RESULTS: A total of 26 interviews were conducted with CCFA Partners cohort members. Various themes emerged from the interviews, including concerns about how specimens would be collected/stored; unauthorized access to samples and/or loss of confidentiality; use of samples for purposes outside of what was consented (or for research not related to IBD); and life insurance discrimination. Most respondents seemed unconcerned about their samples being used for genetic studies. Perceived personal and societal benefits included advancing IBD research, leading to a cure; altruistic feelings of helping others or family members with IBD; and hope that they might personally benefit, although most understood that they likely would not. These themes aided in the development of a survey instrument to assess perceptions of biobanking. A total of 824 CCFA Partners cohort members were asked to participate in a survey of perceptions of biobanking, 476 (58%) completed the survey. In all, 173 (38.3%) reported they would definitely donate samples, 253 (56.0%) would probably donate, 23(5.1%) probably not, 3(0.7%) would definitely not donate. No significant differences in willingness to donate samples were seen for Crohn’s disease (CD) versus ulcerative colitis (UC) (P = 0.95) or for remission versus active disease (P = 0.69 for CD, 0.49 for UC). For biospecimen sample types, 440(93.0%) would donate saliva, 425(89.7%) blood, and 367(77.6%) stool. CONCLUSIONS: A majority of IBD patients in this cohort demonstrated a willingness to donate a broad range of specimens for biobanking. Participants were more willing to donate blood or saliva samples compared to stool. Concerns about biobanks included loss of confidentiality and use of samples outside of what was consented. Patients perceived biobanking as possibly leading to a cure for IBD. Addressing concerns will aid in consent development for biobanking in IBD and promote targeted educational activities within the IBD community on biobanks.