ArticleHealth affairs (Project Hope)2018
Encouraging Participation And Transparency In Biobank Research.
Article in Health affairs (Project Hope), 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
27 citing papers in PubMed, 1 synthesis or guideline pooled 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
- When genomics companies act as biobanks: governance challenges in an era of genomic assetization.Frontiers in genetics · 2026Article
- The Genetic Data Market: Institutional Governance of Academic/Industry Research Partnerships for the Public Good.The American journal of bioethics : AJOB · 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
- Using dataflow diagrams to support research informed consent data management communications: participant perspectives.Journal of the American Medical Informatics Association : JAMIA · 2025Article
- Building a Decentralized Biobanking App for Research Transparency and Patient Engagement: Participatory Design Study.JMIR human factors · 2025Article
- Qualitative evaluation to improve participant engagement and retention in remote COVID-19 treatment trials.Discover public health · 2025Article
- Lessons for a learning health system: Effectively communicating to patients about research with their health information and biospecimens.Learning health systems · 2025Article
- Do biobanks need pharmacists? Support of pharmacy students to biobanking of human biological material for pharmaceutical research and development.Frontiers in pharmacology · 2024Article
- Non-Fungible Tokens for Organoids: Decentralized Biobanking to Empower Patients in Biospecimen Research.Blockchain in healthcare today · 2024Article
- US Residents' Preferences for Sharing of Electronic Health Record and Genetic Information: A Discrete Choice Experiment.Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research · 2023Article
- UPO Biobank: The Challenge of Integrating Biobanking into the Academic Environment to Support Translational Research.Journal of personalized medicine · 2023Article
- "Consent Does Not Scale": Laying Out the Tensions in Balancing Patient Autonomy with Public Benefit in Commercializing Biospecimens.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2023Review
- Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study.JMIR cancer · 2022Article
- An Ethics Framework for Evaluating Ownership Practices in Biomedical Citizen Science.Citizen science : theory and practice · 2022Article
- Implications of Research Biopsies in Clinical Trials.The oncologist · 2021Article
- Translation and validation of the greek version of a questionnaire measuring patient views on participation in clinical trials.BMC health services research · 2021Article
- Identifying the nature and extent of public and donor concern about the commercialisation of biobanks for genomic research.European journal of human genetics : EJHG · 2021Article
- Public trust and global biobank networks.BMC medical ethics · 2020Article
- "My Research Is Their Business, but I'm Not Their Business": Patient and Clinician Perspectives on Commercialization of Precision Oncology Data.The oncologist · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
Medical biobanks often struggle to obtain sustainable funding. Commercialization of specimens is one solution, but disclosure of commercial interests to potential contributors can be dissuasive. Recent revisions to the federal human subjects research regulations will soon mandate such commercialization disclosure in some circumstances, which raises questions about implications for practice. In this nationally representative, probability-based survey sample of the US adult population, we found that 67 percent of participants agreed that clear notification of potential commercialization of biospecimens is warranted, but only 23 percent were comfortable with such use. Sixty-two percent believed that profits should be used only to support future research, and 41 percent supported sharing profits with the public. We also considered other factors related to disclosure in our analysis and argue for a "disclosure plus" standard: informing potential contributors that their biospecimens might be accessed by commercial organizations and explaining how profits would be used to both enhance transparency and facilitate contributors' altruistic motivations.
Indexed as
Identifiers
What OpenQuestion holds
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.