Biobanking for research: a survey of patient population attitudes and understanding
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ORIGINAL ARTICLE
Biobanking for research: a survey of patient population attitudes and understanding Alanna Kulchak Rahm & Michelle Wrenn & Nikki M. Carroll & Heather Spencer Feigelson
Received: 24 January 2013 / Accepted: 4 April 2013 # Springer-Verlag Berlin Heidelberg 2013
Abstract Population-based biobanks are a critical resource for genetic research. It is important to know what potential participants understand about the risks and benefits of providing samples in order to ensure adequate informed consent. Kaiser Permanente Colorado (KPCO) is currently planning a biobank where adult members would be asked to contribute an additional tube of blood during a routine blood draw. Adult KPCO members in clinic waiting rooms were asked to read an informational brochure and informed consent form. Respondents then completed a survey to evaluate their understanding of the materials, willingness to provide a blood sample to a biobank, and facilitators and barriers to participation. Two hundred three members participated in the survey, of whom 69 % indicated willingness to contribute to a biobank. Nearly all understood that they would not be paid for any products resulting from the use of their blood and would not receive results from their samples (91 and 84 %, respectively). Seventy-four percent would donate a sample because, “it is important to contribute to research,” and over half the participants (56 %) said they had no concerns about contributing to a biobank. Of those with concerns, 35 % said information security was a reason. In multivariate models, older age and trust in KPCO were significant predictors of willingness to participate (p=0.03 and p60 years of age) and trust in KPCO were associated with willingness to participate in the biobank (adjusted OR, 2.73; 95 % CI, 1.10–6.76 for the older age group and adjusted OR, 3.39; 95 % CI, 2.04–5.64 for trust in KPCO). Race/ethnicity, gender, and education were not significant predictors of willingness to participate. When asked about familiarity with biobanks and willingness to contribute to one, over two thirds (67 %) of respondents had not previously heard of biobanks or biorepositories, yet most (69 %) said they would provide an additional tube of blood to be stored in the biobank for future research. Sixty-one percent would still provide a sample even if KPCO was required to submit the information from the samples to a government
J Community Genet Table 1 Characteristics of survey participants and predictors of willingness to provide a sample to the KPCO biobank
Participant characteristics
p value
Number of patients (%), N=203
Unadjusted odds ratio (95 % CI)a
Adjusted odds ratio (95 % CI)b
51 (25) 72 (36) 80 (39)
Ref 2.58 (1.21–5.52) 3.92 (1.76–8.73)
Ref 2.03 (0.87–4.73) 2.73 (1.10–6.76)
0.10 0.03
71 (35) 132 (65)
Ref 1.26 (0.67–2.37)
Ref 1.47 (0.70–3.07)
0.31
159 (78) 44 (22)
Ref 0.43 (0.21–0.86)
Ref 0.46 (0.21–1.04)
0.06
43 (21) 57 (28) 70 (35) 33 (16)
Ref 1.14 (0.48–2.70) 0.78 (0.35–1.75) 1.60 (0.53–4.82) 3.58 (2.18–5.88)
Ref 1.38 (0.5
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