ArticleLife sciences, society and policy2013
Neglected ethical issues in biobank management: Results from a U.S. study.
Article in Life sciences, society and policy, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 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
34 citing papers in PubMed.
- How to communicate and what to disclose to participants in a recall-by-genotype research approach: a multistep empirical study.Journal of community genetics · 2024Article
- Imaging biobanks: operational limits, medical-legal and ethical reflections.Frontiers in digital health · 2024Review
- Stakeholder engagement to ensure the sustainability of biobanks: a survey of potential users of biobank services.European journal of human genetics : EJHG · 2022Article
- Challenges to biobanking in LMICs during COVID-19: time to reconceptualise research ethics guidance for pandemics and public health emergencies?Journal of medical ethics · 2022Article
- Purpose, Partnership, and Possibilities: The Implementation of the Dog Aging Project Biobank.Biomarker insights · 2022Article
- Analysis of Biospecimen Demand and Utilization of Samples from the National Amyotrophic Lateral Sclerosis Biorepository.Biopreservation and biobanking · 2021Article
- Stakeholder perspectives on the ethico-legal dimensions of biobanking in South Africa.BMC medical ethics · 2021Article
- Recommendations for a Dutch Sustainable Biobanking Environment.Biopreservation and biobanking · 2021Article
- The reconfiguration of biobanks in Europe under the BBMRI-ERIC framework: towards global sharing nodes?Life sciences, society and policy · 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
- Commentary on Improving Biospecimen Utilization by Classic Biobanks: Identifying Past and Minimizing Future Mistakes.Biopreservation and biobanking · 2019Article
- The Utilization of Biospecimens: Impact of the Choice of Biobanking Model.Biopreservation and biobanking · 2019Article
- Ensuring Effective Utilization of Biospecimens: Design, Marketing, and Other Important Approaches.Biopreservation and biobanking · 2019Article
- Critical Financial Challenges for Biobanking: Report of a National Cancer Institute Study.Biopreservation and biobanking · 2019Article
- Issues in the Use of Human Tissues to Support Precision Medicine.Journal of health care for the poor and underserved · 2019Article
- Aspects of Modern Biobank Activity - Comprehensive Review.Pathology oncology research : POR · 2018Review
- Encouraging Participation And Transparency In Biobank Research.Health affairs (Project Hope) · 2018Article
- Balancing the local and the universal in maintaining ethical access to a genomics biobank.BMC medical ethics · 2017Review
- Young people's awareness on biobanking and DNA profiling: results of a questionnaire administered to Italian university students.Life sciences, society and policy · 2017Article
- 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
6 authors.
Funding
Abstract
The empirical literature on the ethical, legal, and social implications (ELSI) of biobanking has almost entirely relied on the perspectives of those outside of biobanks, such as the general public, researchers, and specimen contributors. Little attention has been paid to the perspectives and practices of those who operate biobanks. We conducted a study of U.S. biobanks consisting of six in-depth case studies and a large online survey (N =456), which was developed from the case study results. The case studies included qualitative interviews with a total of 24 personnel. Both interview and survey questions focused on how biobanks operate, and what policies and practices govern their relationships with specimen contributors and the researchers who use the specimens. Analysis revealed unexpected ethical dilemmas embedded in those policies and practices that highlight a need for practical planning. In this paper, we review three issues seldom explored in the ELSI literature: 1. the discrepancy between biobankers' hope that the bank will exist "permanently" and the fact that funding is limited; 2. the lack of planning for what will happen to the specimens if the bank closes; and 3. the concern that once collected, specimens may be underutilized. These dilemmas are missing from current public representations of biobanks, which instead focus on the intrinsic value in storing specimens as essential to the advancement of translational research. We argue that attention to these issues is important for biobanking, and that greater transparency of these policies and practices will contribute to promoting public trust in biobanks.
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.