ArticleLife sciences, society and policy2016
The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate.
Article in Life sciences, society and policy, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 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
28 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
- Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.American journal of human genetics · 2017Trial
- Biobank consent preferences and implications for a mixed consent model: biomedical researchers vs. community stakeholders in a semi-urban Yoruba community, Nigeria.Frontiers in genetics · 2026Article
- Social and Behavioral Genomics: On the Ethics of the Research and Its Downstream Applications.Annual review of genomics and human genetics · 2025Review
- From ownership to custodianship of tumor biopsy tissue in genomic testing: a mixed methods study of patient views.The oncologist · 2024Article
- Facilitating the ethical sourcing of donor hematopoietic stem cells for cell and gene therapy research and development.Regenerative medicine · 2024Article
- When Biobanks Meet Religion: Association Between Religiosity and Attitudes of Polish Medical Students Toward Biobanking of Human Biological Material for Research Purposes.Journal of religion and health · 2024Article
- Principles for Health Information Collection, Sharing, and Use: A Policy Statement From the American Heart Association.Circulation · 2023Review
- Get this thing out of my body! Factors determining consent for translational oncology research: a qualitative research.Journal of translational medicine · 2023Article
- Better governance starts with better words: why responsible human tissue research demands a change of language.BMC medical ethics · 2022Article
- Gamete and embryo donation for research: what might shape the willingness to donate among gamete donors and recipients?Journal of assisted reproduction and genetics · 2022Article
- Promoting Ethical Deployment of Artificial Intelligence and Machine Learning in Healthcare.The American journal of bioethics : AJOB · 2022Article
- Associations between the Willingness to Donate Samples to Biobanks and Selected Psychological Variables.International journal of environmental research and public health · 2022Article
- Social differentiation of the perception and human tissues donation for research purposes.Frontiers in genetics · 2022Article
- When Not to Ask: A Defense of Choice-Masking Nudges in Medical Research.Journal of health care law & policy · 2022Article
- The Andalusian Registry of Donors for Biomedical Research: Five Years of History.Biotech (Basel (Switzerland)) · 2021Article
- Patient Preferences for Use of Archived Biospecimens from Oncology Trials When Adequacy of Informed Consent Is Unclear.The oncologist · 2020Article
- Article
- Attitudes of blood donors to their sample and data donation for biobanking.European journal of human genetics : EJHG · 2019Article
- Biospecimens, Research Consent, and Distinguishing Cell Line Research.JAMA oncology · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
Donors to biobanks are typically asked to give blanket consent, allowing their donation to be used in any research authorized by the biobank. This type of consent ignores the evidence that some donors have moral, religious, or cultural concerns about the future uses of their donations - concerns we call "non-welfare interests". The nature of non-welfare interests and their effect on willingness to donate to a biobank is not well understood.In order to better undersand the influence of non-welfare interests, we surveyed a national sample of the US population (in June 2014) using a probability-based internet panel. Logistic regression models assessed the demographic and attitudinal characteristics associated with participants' willingness to give consent for unspecified future uses of their donation when presented with 7 research scenarios that raised possible non-welfare interest concerns. Most people had non-welfare interests that significantly affect their willingness to donate to a biobank using blanket consent. Some non-welfare interests are associated with subgroups but others are not. A positive attitude toward biomedical research in general was associated with increased willingness to donate, while concerns about privacy and being African American were associated with decreased willingness.Non-welfare interests matter and can diminish willingness to donate to a biobank. Our data suggest that trust in research promotes willingness to donate. Ignoring non-welfare interests could erode this trust. Donors' non-welfare interests could be accommodated through greater transparency and easier access to information about the uses of donations.
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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.