Trial reportJournal of empirical research on human research ethics : JERHRE2014
Impact of non-welfare interests on willingness to donate to biobanks: an experimental survey.
Trial report in Journal of empirical research on human research ethics : JERHRE, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 2 of them syntheses 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
15 citing papers in PubMed, 2 syntheses or guidelines 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
- Mapping of Crowdsourcing in Health: Systematic Review.Journal of medical Internet research · 2018Pooled it
- 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
- Get this thing out of my body! Factors determining consent for translational oncology research: a qualitative research.Journal of translational medicine · 2023Article
- 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
- Stem cell preservation for regenerative therapies: ethical and governance considerations for the health care sector.NPJ Regenerative medicine · 2020Review
- Encouraging Participation And Transparency In Biobank Research.Health affairs (Project Hope) · 2018Article
- Clinical Trial Participants' Views of the Risks and Benefits of Data Sharing.The New England journal of medicine · 2018Article
- Community recommendations on biobank governance: Results from a deliberative community engagement in California.PloS one · 2017Article
- A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Article
- Article
- The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate.Life sciences, society and policy · 2016Article
- Article
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
Abstract
The ethical debate surrounding biobanks has focused on protecting donors' welfare and privacy. However, little attention has been given to the ethical significance of donor interests that go beyond privacy and welfare (non-welfare interests [NWIs]), such as their concerns about the moral or religious implications of researchers using their donated samples. Using an experimental survey design with 1,276 participants recruited via Amazon Mechanical Turk (MTurk), we studied the potential impact of eight NWI scenarios on people's attitudes toward research studies being performed on samples donated to biobanks by assessing willingness to donate, attitudes toward disclosure of NWIs, impact of timing and format of disclosure (number of NWIs disclosed on a page), and participant factors associated with willingness to donate. Baseline willingness to donate to biobanks prior to any mention of NWIs was comparable with previous studies, at 85% to 89%. Most participants wanted NWI disclosures prior to donation to biobanks, but far fewer favored specific consent. Overall pattern of responses showed that as participants receive more information about NWIs, willingness to donate decreases in a scenario dependent manner. Specifically, NWI concerns about profit seeking research and insurance risk assessment had the strongest impact, even greater than controversial issues such as reproductive research, regardless of political, religious, and most other characteristics of respondents. Based on the results, a schema of NWI types is proposed that could be used for further research and policy discussions.
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.