Abstract
Biobanks have evolved, and their governance procedures have undergone important transformations. Our paper examines this issue by focusing on the perspective of the professionals working in management or scientific roles in research-based biobanks, who have an important impact on shaping these transformations. In particular, it highlights that recent advances in molecular medicine and genomic research have raised a range of ethical, legal and societal implications (ELSI) related to biobank-based research, impacting directly on regulations and local practices of informed consent (IC), private-public partnerships (PPPs), and engagement of participants. In our study, we investigate the ways that these concerns influence biobanking practices and assess the level of satisfaction of the cross-national biobanking research communities with the ELSI related procedures that are currently in place. We conducted an online survey among biobankers and researchers to investigate secondary use of data, informing and/or re-contacting participants, sharing of data with third parties from industry, participant engagement, and collaboration with industrial partners. Findings highlight the need for a more inclusive and transparent biobanking practice where biobanks are seen in a more active role in providing information and communicating with participants; the need to improve the current IC procedures and the role of biobanks in sharing of samples and data with industry partners and different countries, and the need for practical, tangible and hands-on ethical and legal guidance.
Highlights
The European biobank landscape has experienced extensive growth and change over the last few decades [1,2,3]
This study was driven by the key research question: how do the current changes related to the ethical, legal, societal and scientific landscape of biobanking impact on attitudes, beliefs and practices in the sector? Based on the hypothesis that ethical, legal and societal challenges, manifested in different local practices of informed consent (IC), private-public partnerships, and engagement of participants are affecting the use of biobanks, we investigated both professional experiences and opinions about (1) secondary use and sharing of data and collaboration with industrial partners and (2) informing and/or re-contacting participants with a special focus on participant engagement
Well over half of respondents work in publicly financed biobanks, including both national and regional investments (59.6%), around a quarter of the biobanks are both publicly and privately financed (26.2%), while the remainder are privately financed (8.2%) or unknown by the respondent (17.6%)
Summary
The European biobank landscape has experienced extensive growth and change over the last few decades [1,2,3]. Defined originally as mere ‘collections of samples and tissues’ [4] and ‘associated data’ [5,6,7,8], biobanks have evolved into complex infrastructures, which contribute in important ways to health research and operate at national, regional and global levels [9, 10]. This development, together with current advances in molecular medicine and genomics, has led to ethical, legal and societal implications (ELSI) related to three main areas of concern. Transparency about the generation and managing of research data with possible health utility for research participants is vital in order for biobanks to develop ethically robust policies to cater for this facility
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