Abstract
Background: Achieving high participation of communities representative of all sub-populations is needed in order to ensure broad applicability of biobank study findings. This study aimed to understand potentially mutable attitudes and opinions commonly correlated with biobank participation in order to inform approaches to promote participation in biobanks. Methods: Adults from two University of Maryland (UMD) Faculty Physicians, Inc. outpatient practices were invited to watch a video and complete a survey about a new biobank initiative. We used: Chi-square to assess the relationship between willingness to join the biobank and participant characteristics, other potentially mutable attitudes and opinions, and trust in the UMD. We also used t-test to assess the relationship with trust in medical research. We also prioritize proposed actions to improve attitudes and opinions about joining biobanks according to perceived responsiveness. Results: 169 participants completed the study, 51% of whom indicated a willingness to join the biobank. Willingness to join the biobank was not associated with age, gender, race, or education but was associated with respondent comfort sharing samples and clinical information, concerns related to confidentiality, potential for misuse of information, trust in UMD, and perceived health benefit. In ranked order, potential actions we surveyed that might alleviate some of these concerns include: increase chances to learn more about the biobank, increase opportunities to be updated, striving to put community concerns first, including involving community members as leaders of biobank research, and involving community members in decision making. Conclusions: This study identified several attitudes and opinions that influence decisions to join a biobank, including many concerns that could potentially be addressed by engaging community members. We also demonstrate our method of prioritizing ways to improve attitudes and opinions about joining a biobank according to perceived responsiveness.
Highlights
Population-based biobanks are collections of donated bio-specimens such as tissue and blood samples that may include donor-specific information, such as demographic and clinical information and genotypic data that can be stored for research purposes
By putting community concerns first, 36% with awareness of community members leading biobank research, and 29% with community members having a role in decisions about the biobank
Our findings suggest that providing potential participants chances to learn more about the biobank and chances to be updated regularly about the biobank may be effective approaches to promote the awareness of benefits of biobank participation
Summary
Population-based biobanks are collections of donated bio-specimens such as tissue and blood samples that may include donor-specific information, such as demographic and clinical information and genotypic data that can be stored for research purposes. We used: Chi-square to assess the relationship between willingness to join the biobank and participant characteristics, other potentially mutable attitudes and opinions, and trust in the UMD. We prioritize proposed actions to improve attitudes and opinions about joining biobanks according to perceived responsiveness. Willingness to join the biobank was not associated with age, gender, race, or education but was associated with respondent comfort sharing samples and clinical information, concerns related to confidentiality, potential for misuse of information, trust in UMD, and perceived health benefit. Conclusions: This study identified several attitudes and opinions that influence decisions to join a biobank, including many concerns that could potentially be addressed by engaging community members. We demonstrate our method of prioritizing ways to improve attitudes and opinions about joining a biobank according to perceived responsiveness
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