ArticleScience translational medicine2013
Stewardship practices of U.S. biobanks.
Article in Science translational medicine, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 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
22 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Recommendations from the international stroke genetics consortium, part 2: biological sample collection and storage.Stroke · 2015Guideline
- Exploring public concerns for sharing and governance of personal health information: a focus group study.JAMIA open · 2021Article
- Current practices for access, compensation, and prioritization in biobanks. Results from an interview study.European journal of human genetics : EJHG · 2018Article
- From in vivo to in vitro: How the Guatemala STD Experiments Transformed Bodies Into Biospecimens.The Milbank quarterly · 2018Article
- Grudging Trust and the Limits of Trustworthy Biorepository Curation.The American journal of bioethics : AJOB · 2018Article
- Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.The American journal of bioethics : AJOB · 2018Article
- Informed Consent in Translational Genomics: Insufficient Without Trustworthy Governance.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2018Article
- Assessing Researcher Needs for a Virtual Biobank.Biopreservation and biobanking · 2017Article
- Which Results to Return: Subjective Judgments in Selecting Medically Actionable Genes.Genetic testing and molecular biomarkers · 2017Article
- "Forward-Thinking" in U.S. Biobanking.Genetic testing and molecular biomarkers · 2017Article
- Access policies in biobank research: what criteria do they include and how publicly available are they? A cross-sectional study.European journal of human genetics : EJHG · 2017Article
- Lessons from HeLa Cells: The Ethics and Policy of Biospecimens.Annual review of genomics and human genetics · 2016Review
- Qualitative study on custodianship of human biological material and data stored in biobanks.BMC medical ethics · 2016Article
- With great (participant) rights comes great (researcher) responsibility.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Article
- A critical analysis of cancer biobank practices in relation to biospecimen quality.Biophysical reviews · 2015Review
- The translational potential of research on the ethical, legal, and social implications of genomics.Genetics in medicine : official journal of the American College of Medical Genetics · 2015Review
- Returning a Research Participant's Genomic Results to Relatives: Perspectives from Managers of Two Distinct Research Biobanks.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
- Perceptions of patients with inflammatory bowel diseases on biobanking.Inflammatory bowel diseases · 2015Article
- Underutilization of specimens in biobanks: an ethical as well as a practical concern?Genetics in medicine : official journal of the American College of Medical Genetics · 2014Article
- Mining the Data: Exploring Rural Patients' Attitudes about the Use of Their Personal Information in Research.AJOB empirical bioethicsArticle
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
Biobanks require new governance models that address their ethical and regulatory challenges. One model relies on stewardship of specimens throughout their life course. Here, we discuss findings from our survey of 456 U.S. biobank managers that addressed whether and how biobanks steward their specimens. The findings reveal that most biobanks do not create ongoing relationships with contributors but do practice stewardship over storing and sharing of specimens. Biobanks now need guidance to fully articulate stewardship practices that ensure respect for contributors while facilitating research.
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.