Current practices for access, compensation, and prioritization in biobanks. Results from an interview study

Abstract

Human biological materials and related data stored in biobanks are valuable resources for biomedical research. Transparent, effective, and efficient governance structures and procedures for access, compensation, and priority setting are needed, but recent debates indicate challenges in the practical application of such governance processes. This study aimed to assess the practical experiences and attitudes of biobank experts regarding the governance of biosample access, prioritization, and compensation. Qualitative, semi-structured telephone interviews were conducted with 20 biobank directors from eight countries. Respondents highlighted the need for sound governance structures in order to ensure acceptance by all stakeholders (patients/donors, researchers, research funders, public, and others). They stressed practical difficulties in trying to make best use of biomaterials. As biobanks often form part of larger academic and clinical settings, the different and sometimes conflicting interests of researchers, clinicians, patients, funders, and biobank staff currently affect the governance of access decisions. Investments such as intellectual input, financial, and human resources need to be compensated adequately. Biobanks thereby have a dual role stewarding the hosted biosamples and acting as a service provider for local researchers from universities or hospitals. In order to facilitate efficient use of human biological materials, greater harmonization of at least minimum standards for access and compensation are required at both a national and an international level.

Public awareness of and attitudes towards research biobanks in Latvia

“…Such criticisms highlight the need to seek new ways of promoting the values of transparency, participation, inclusion and accountability and of overcoming the risk of instrumentalisation of donors by looking at potential donors as just a resource providing samples and personal data to a biobank or passive objects of research requiring protection. One possible solution suggested by Langhof et al is that biobanks should "concentrate on how to balance the different interests of patients/donors, (public) funding agencies, clinician/ researcher collecting, and biobank staff processing and storing human biological materials and, thus, acting as stewards of the hosted biosamples" [14]. However, this approach, which involves stakeholders but still nominates scientists as the main responsible stewards of samples and data, could be outdated in the context of biobanking.…”

The urgency of utilizing COVID-19 biospecimens for research in the heart of the global pandemic

“…Most importantly, this approach reduces potential exposure by diminishing transfer of biohazardous materials, limiting the number of additional specimens needed for collection, and adhering to biosafety guidelines. Further, it creates the potential to generate a holistic, statistically powered, and standardized cohort characterization by compiling all results in one bank, and it fosters important long-term follow up by overcoming the well-documented issues with decentralized biobank sustainability [6][7][8][9][10][11][12][13][14]. The creation of this resource at NYULH has enriched the community with high-quality patient-linked COVID-19 specimens, which has already contributed to novel findings about SARS-CoV-2 epidemiology [3].…”

The urgency of utilizing COVID-19 biospecimens for research in the heart of the global pandemic

“…Most importantly, this approach reduces potential exposure by diminishing transfer of biohazardous materials, limiting the number of additional specimens needed for collection, and adhering to biosafety guidelines. Further, it creates the potential to generate a holistic, statistically powered, and standardized cohort characterization by compiling all results in one bank, and it fosters important long-term follow up by overcoming the well-documented issues with decentralized biobank sustainability [6][7][8][9][10][11][12][13][14] . The creation of this resource at NYULH has enriched the community with high-quality patientlinked COVID-19 specimens, which has already contributed to novel findings about SARS-CoV-2 epidemiology 3 .…”