Stakeholder research on biospecimen needs and reactions to the development of a national cancer human biobank by the National Cancer Institute.

An initial survey conducted by the National Cancer Institute (NCI) in October 2008 with cancer researchers around the country revealed both a need and support for the development of a national cancer HUman Biobank (caHUB). NCI sought additional feedback from decision makers whose organizations are potential users of a caHUB and who would have a direct influence on whether or not their organizations would participate in a caHUB. NCI commissioned online discussion groups with executive-level decision makers at academic institutions with cancer research programs and pharmaceutical/biotechnology organizations. Across both groups, a clear need for a national caHUB was uniformly expressed. While having a broad range of biospecimens--especially those hard to obtain--in one location was important, stakeholders agreed that the level of standardization the caHUB could offer was the most important benefit. Stakeholders believed the development of standard operating procedures around collection, storage, and quality assessment of biospecimens would be the greatest contribution of the caHUB, allowing more collaboration and higher confidence in research results. Barriers to contribution and/or use of the caHUB focused on funding and resources required of participants, concerns over standard operating procedures, and impositions on their organizations' intellectual property. Findings from the qualitative research are consistent with previous research and point to an overwhelming need for a solution that will address growing concerns about access and availability of quality biospecimens to conduct cancer research and ultimately expedite future discoveries to treat and cure cancer.

Assessing the need for a standardized cancer HUman Biobank (caHUB): findings from a national survey with cancer researchers.

BACKGROUND: Before developing a national standardized cancer HUman Biobank (caHUB), the National Cancer Institute sought feedback from the cancer research community. METHODS: NCI conducted an online survey (N = 727) about current biospecimen needs and reactions to creating a national resource cancer researchers and others. RESULTS: Most (56%) participants obtained biospecimens within their own institutions, and 63% wanted more information about their biospecimens. Large proportions reported difficulty obtaining biospecimens of adequate numbers (39%) and quality (47%). Low-quality biospecimens resulted in 60% questioning their findings and 81% limiting the scope of their work. Nine in every 10 (91.3%) respondents reacted positively to the idea of a national biospecimen resource, with 62% reporting that they would obtain biospecimens from it and 53% reporting that they would be willing to contribute biospecimens to it. CONCLUSIONS: Initial reactions to caHUB were positive and seen as a feasible option to addressing respondents' research challenges. National Cancer Institute will need to address several concerns to assure its adoption, including standardization and sustainability.