ArticleScience and engineering ethics2014
'Mirroring' the ethics of biobanking: what should we learn from the analysis of consent documents[corrected]?
Article in Science and engineering ethics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 11 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
11 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Towards a Design Toolkit of Informed Consent Models Across Fields: A Systematic Review.Science and engineering ethics · 2022Pooled it
- Stakeholders' perspectives on the post-mortem use of genetic and health-related data for research: a systematic review.European journal of human genetics : EJHG · 2020Pooled it
- Returning of individual genetic findings to biobank participants: a mixed methods study results in Lithuania.BMC medical ethics · 2025Article
- Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research.Science and engineering ethics · 2022Article
- A Literature Review on Ethics for AI in Biomedical Research and Biobanking.Yearbook of medical informatics · 2022Review
- The UK ME/CFS Biobank: A Disease-Specific Biobank for Advancing Clinical Research Into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.Frontiers in neurology · 2018Article
- Using a participatory approach to develop and implement the UK ME/CFS Biobank.Fatigue : biomedicine, health & behavior · 2018Article
- The social dimension of biobanking: objectives and challenges.Life sciences, society and policy · 2017Article
- Social and Communicative Functions of Informed Consent Forms in East Asia and Beyond.Frontiers in genetics · 2017Article
- "It's all about trust": reflections of researchers on the complexity and controversy surrounding biobanking in South Africa.BMC medical ethics · 2016Article
- Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents.Journal of medical ethics · 2016Article
Corrections and comments
- Erratum issuedJurate, Serepkaite [corrected to Serepkaite, Jurate]; Zivile, Valuckiene [corrected to Valuckiene, Zivile]; Eugenijus, Gefenas [corrected to Gefenas, Eugenijus]
Authors and funding
6 authors.
Funding
Abstract
Biobanks have been recognized as a key research infrastructure and how to approach ethical questions has been a topic of discussion for at least a decade by now. This article explores the characteristics of donors' participation in European biobanks as reflected in the consent documents of a selection of different biobanks from various European countries. The primary aim of this study is to understand how donors are informed about their participation in biobanking. Also the paper discusses what the most important thematic issues of information are to be given to the biobank participants and how this information should be presented in the consent documents. For these purposes, we analyse consent documents from 14 biobanks in 11 countries for six ethically relevant issues: (1) model of consent, (2) scope of future research, (3) access to medical data, (4) feedback to the participants, (5) consent withdrawal, and (6) role of research ethics committee. In order to compare different trends of informing donors of human biological material and medical data, we interpret the six analysed issues in the context of respect to donor's autonomy paradigm. Although the results of the paper reflect the heterogeneity of biobank consent document policies applied in different European countries, we uncovered some trends and suggested several examples of good practices to balance the interests of the donors with those of the researchers and future patients.
Indexed as
Identifiers
24136750What 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.