Recommendations for a Dutch Sustainable Biobanking Environment

Abstract

Biobanks and their collections are considered essential for contemporary biomedical research and a critical resource toward personalized medicine. However, they need to operate in a sustainable manner to prevent research waste and maximize impact. Sustainability is the capacity of a biobank to remain operative, effective, and competitive over its expected lifetime. This remains a challenge given a biobank's position at the interplay of ethical, societal, scientific, and commercial values and the difficulties in finding continuous funding. In the end, biobanks are responsible for their own sustainability. Still, biobanks also depend on their surrounding environment, which contains overarching legislative, policy, financial, and other factors that can either impede or promote sustainability. The Biobanking and Biomolecular Research Infrastructure for The Netherlands ( ) has worked on improving the national environment for sustainable biobanking. In this article, we present the final outcomes of this project. First, we summarize the current overarching challenges of the Dutch biobanking landscape. These challenges were gathered during workshops and focus groups with Dutch biobanks and their users, for which the full results are described in separate reports. The main overarching challenges relate to sample and data quality, funding, use and reuse, findability and accessibility, and the general image of biobanks. Second, we propose a package of recommendations—across nine themes—toward creating overarching conditions that stimulate and enable sustainable biobanking. These recommendations serve as a guideline for the Dutch biobanking community and their stakeholders to jointly work toward practical implementation and a better biobanking environment. There are undoubtedly parallels between the Dutch situation and the challenges found in other countries. We hope that sharing our project's approach, outcomes, and recommendations will support other countries in their efforts toward sustainable biobanking.

Pediatric biobanks to enhance clinical and translational research for children

“…Despite these economic challenges, biobanks serve a valuable infrastructural role for accelerating the transfer of scientific information into technological applications, so biobanking activities have an intrinsic economic value. In this regard, the solution offered by van der Stijl et al for Dutch biobanks could help to define how biobanking activities can be financed in pediatrics [ 52 ]. Indeed, biobanks receive funding and revenue from a variety of sources, including (i) the commercialization of research results, products, and services (e.g., intellectual property royalties, consultancy fees, assay and tool development, and sample analysis); (ii) donations from (patient) foundations or individuals; (iii) institutional budget private funding (e.g., pharmaceutical companies); (iv) public funding (e.g., national government and research grants); and (v) user fees for samples and data.…”

“…A useful strategy in this situation may be to employ educational and approachable movies that explain what it means to conduct research, as well as the research topic and what the researcher will do with the biological materials and associated health data [ 60 ] To engage and educate children and their parents for enhancing their knowledge about the medical research Sustainable strategy Pediatric medical research receives less funding than adult medical research, as it is frequently unattractive to the pharmaceutical sector due to the low incidence of pediatric disorders and additional consenting stages. National governmental action is required to sustain biobanks over the long term [ 52 ] To improve public awareness; and to incorporate business-related standards into fundamental and clinical research practice …”

Data Model for the Comprehensive Management of Biobanks and Its Contribution to Personalized Medicine

“…A widely accepted definition of biobank includes the management of samples (biological materials) but also their related information and data [1,2], playing a crucial role in biomedical research by providing biological samples and associated data for scientific purposes. Biobanks are professionalized infrastructures that require increasingly complex governance models involving many stakeholders, including donors, researchers, clinicians, funders and industry, playing a central role in sustainability [3]. In addition, the governance of biobanks must be adapted to the needs of and trends in research, with the highlighted role of next-generation biobanking for personalized medicine [2].…”