Access to Biobanks: Responsibilities Within a Research Ecosystem.

ABSTRACT

The past few decades have seen rapid increases in the size and scope of biobanks, with large-scale publicly funded ventures supporting health-related research becoming the norm. As these biobanks are increasingly asked to share their data, including for example, genome-wide analyses, questions arise about how such decisions are made, including whether applicants' research aligns with the aims of the biobank. To better understand how biobanks make decisions relating to their data use, we sought the views and experiences of those involved in decision-making relating to data access at 11 large-scale publicly funded health biobanks. We were particularly interested in how potentially contentious applications were approached. Interviewees had some concerns about decisions on applications they felt their governance structures could not reach. We ask broader questions about the responsibility of those involved in biobank access decisions-those working early in the research process-when considering such issues.