ArticlePloS one2016
Understanding the Public's Reservations about Broad Consent and Study-By-Study Consent for Donations to a Biobank: Results of a National Survey.
Article in PloS one, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers.
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
19 citing papers in PubMed.
- An Electronic Tool to Support Patient-Centered Broad Consent: A Multi-Arm Randomized Clinical Trial in Family Medicine.Annals of family medicineTrial
- Beyond mistrust: Diverse biobanking preferences among parents and adolescents with sickle cell disease.Genetics in medicine : official journal of the American College of Medical Genetics · 2026Article
- Norwegian kidney biopsy biobank (NorKiBB): organization, baseline characteristics, and generalizability of a low-cost national biobank.BMC nephrology · 2025Article
- From ownership to custodianship of tumor biopsy tissue in genomic testing: a mixed methods study of patient views.The oncologist · 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
- Public preferences towards data management and governance in Swiss biobanks: results from a nationwide survey.BMJ open · 2022Article
- An Idealized Clinicogenomic Registry to Engage Underrepresented Populations Using Innovative Technology.Journal of personalized medicine · 2022Article
- Social differentiation of the perception and human tissues donation for research purposes.Frontiers in genetics · 2022Article
- An Integrated, Scalable, Electronic Video Consent Process to Power Precision Health Research: Large, Population-Based, Cohort Implementation and Scalability Study.Journal of medical Internet research · 2021Article
- Public Attitudes toward Biobanking of Human Biological Material for Research Purposes: A Literature Review.International journal of environmental research and public health · 2019Review
- Sexual and gender minority youth's perspectives on sharing de-identified data in sexual health and HIV prevention research.Sexuality research & social policy : journal of NSRC : SR & SP · 2019Article
- Population's perspectives toward biobanks in scientific research: a study from Jordan.Pharmacogenomics and personalized medicine · 2019Article
- Genomics, Big Data, and Broad Consent: a New Ethics Frontier for Prevention Science.Prevention science : the official journal of the Society for Prevention Research · 2018Article
- Encouraging Participation And Transparency In Biobank Research.Health affairs (Project Hope) · 2018Article
- Broad Consent for Research on Biospecimens: The Views of Actual Donors at Four U.S. Medical Centers.Journal of empirical research on human research ethics : JERHRE · 2018Article
- Effect of deliberation on the public's attitudes toward consent policies for biobank research.European journal of human genetics : EJHG · 2018Article
- Perspectives of Patients With Cancer on the Ethics of Rapid-Learning Health Systems.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2017Article
- Genes, cells, and biobanks: Yes, there's still a consent problem.PLoS biology · 2017Review
- A blueprint for the next generation of ELSI research, training, and outreach in regenerative medicine.NPJ Regenerative medicine · 2017Review
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
Researchers and policymakers do not agree about the most appropriate way to get consent for the use of donations to a biobank. The most commonly used method is blanket-or broad-consent where donors allow their donation to be used for any future research approved by the biobank. This approach does not account for the fact that some donors may have moral concerns about the uses of their biospecimens. This problem can be avoided using "real-time"-or study-by-study-consent, but this policy places a significant burden on biobanks. In order to better understand the public's preferences regarding biobank consent policy, we surveyed a sample that was representative of the population of the United States. Respondents were presented with 5 biobank consent policies and were asked to indicate which policies were acceptable/unacceptable and to identify the best/worst policies. They were also given 7 research scenarios that could create moral concern (e.g. research intending to make abortions safer and more effective) and asked how likely they would be to provide broad consent knowing that their donation might be used in that research. Substantial minorities found both broad and study-by-study consent to be unacceptable and identified those two options as the worst policies. Furthermore, while the type of moral concern (e.g., regarding abortion, the commercial use of donations, or stem cell research) had no effect on policy preferences, an increase in the number of research scenarios generating moral concerns was related to an increased likelihood of finding broad consent to be the worst policy. The rejection of these ethically problematic and costly extremes is good news for biobanks. The challenge now is to design a policy that combines consent with access to information in a way that assures potential donors that their interests and moral concerns are being respected.
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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.