ArticleEuropean journal of human genetics : EJHG2021
Identifying the nature and extent of public and donor concern about the commercialisation of biobanks for genomic research.
Article in European journal of human genetics : EJHG, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
16 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Opportunities for a national genomic data governance framework in Australia: a systematic review.BMC medical ethics · 2025Pooled it
- A systematic literature review of the 'commercialisation effect' on public attitudes towards biobank and genomic data repositories.Public understanding of science (Bristol, England) · 2024Pooled it
- Navigating tensions between scientific advancement and ethical practice in biobanking: a qualitative study in Japan.Frontiers in genetics · 2026Article
- Research opportunities in precision oncology: perspectives on biospecimen and genomic data sharing from adults with cancer in Ireland.Irish journal of medical science · 2025Article
- Incorporating biobanking into the future of healthcare: exploring patient and healthcare worker perspectives at a Canadian tertiary academic hospital.European journal of human genetics : EJHG · 2025Article
- Towards a trusted genomics repository: Identifying commercialisation fears and preferred forms of governance across segments of the community.Public understanding of science (Bristol, England) · 2025Article
- Perception of Polish patients with cancer of the ethical and legal issues related to biobank research.The oncologist · 2024Article
- Population Neuroscience: Strategies to Promote Data Sharing While Protecting Privacy.Current topics in behavioral neurosciences · 2024Review
- Commercialisation fears and preferred forms of governance: a mixed methods investigation to identify a trusted Australian genomics repository.Frontiers in public health · 2024Article
- Understanding the value of biobank attributes to researchers using a conjoint experiment.Scientific reports · 2023Article
- Webinar report: stakeholder perspectives on informed consent for the use of genomic data by commercial entities.Journal of medical ethics · 2023Article
- The MARS PETCARE BIOBANK protocol: establishing a longitudinal study of health and disease in dogs and cats.BMC veterinary research · 2023Article
- A leap of faith: building the trust in human biobanks.Frontiers in genetics · 2023Article
- Bioethical implications of current state practices of molecular diagnostics in neuropathology.Neuro-oncology · 2022Article
- Benefit sharing in genomic and biobanking research in Uganda: Perceptions of researchers and research ethics committee members.Frontiers in genetics · 2022Article
- An agenda-setting paper on data sharing platforms: euCanSHare workshop.Open research Europe · 2021Article
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Various forms of private investment are considered necessary for the sustainability of biobanks, yet pose significant challenges to public trust. To manage this tension, it is vital to identify the concerns of relevant stakeholders to ensure effective and acceptable policy and practice. This research examines the aspects of commercialisation that are of most concern to the Australian public (n = 800) and patients who had donated their tissue to two large disease specific (cancer) public biobanks (n = 564). Overall, we found a commercialisation effect (higher support for public relative to private) in relation to funding, research location and access to stored biospecimens. The effect was strongest for research locations and access compared to funding. A latent class analysis revealed the pattern of concern differed, with the majority (34.1%) opposing all aspects of commercialisation, a minority supporting all (15.7%), one quarter (26.8%) opposing some (sharing and selling tissue) but not others (research locations and funding), and a group who were unsure about most aspects but opposed selling tissue (23.5%). Patient donors were found to be more accepting of and unsure about most aspects of commercialisation. Members of the (general) public who were motivated to participate in biobanking were more likely to oppose some aspects while supporting others, while those who indicated they would not donate to a biobank were more likely to oppose all aspects of commercialisation. The results suggest that approaches to policy, engagement and awareness raising need to be tailored for different publics and patient groups to increase participation.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.