F Hardcastle

Biobanks have expanded dramatically over the past few decades, as have their storage and computational requirements. These requirements have environmental impacts, including mineral extraction and manufacturing processes associated with digital infrastructures, carbon emissions related to sample storage and data storage and analysis, and associated waste. Here we analyse whether biobanks have any specific policies about these environmental impacts. We also explore the ethical assumptions associated with how people with a professional stake in these discussions - those researchers using biobank resources, digital sustainability experts – think about these issues, and the implications embedded within them. Biobanks we spoke to had no specific relevant policies and researchers reported little awareness of issues. When researchers did discuss the issues, they often drew on consequentialist narratives and/or appealing to worse problems. Some researchers and digital sustainability experts suggested approaches to improving existing and future biobanking practices, though not in a standardised way.

BackgroundBiobanks and biomedical research data repositories collect their samples and associated data from volunteer participants. Their aims are to facilitate biomedical research and improve health, and they are framed in terms of contributing to the public good. Biobank resources may be accessible to researchers with commercial motivations, for example, researchers in pharmaceutical companies who may utilise the data to develop new clinical therapeutics and pharmaceutical drugs. Studies exploring citizen perceptions of public/private interactions associated with large health data repositories/biobanks indicate that there are sensitivities around public/private and/or non-profit/profit relationships and international sample and data sharing. Less work has explored how biobanks communicate their public/private partnerships to the public or to their potential research participants. MethodsWe explored how a biobank’s aims, benefits and risks, and private/public relationships have been framed in public facing recruitment documents (consent forms and participant information sheets).ResultsBiobank documents often communicate their commercial access arrangements but not the detail about what these interactions would entail, and how risks and benefits would be distributed to the public.ConclusionWe argue that this leads to a polarised discourse between public and private entities and/or activities, and fails to attend to the blurred lines between them. This results in a lack of attention to more important issues such as how risks and benefits in general are distributed to the public. We call for a nuanced approach that can contribute to the much-needed dialogue in this space.