ArticleEuropean journal of human genetics : EJHG2010
Retrospective access to data: the ENGAGE consent experience.
Article in European journal of human genetics : EJHG, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 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
19 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Biological Sample Collection to Advance Research and Treatment: A Fight Osteosarcoma Through European Research and Euro Ewing Consortium Statement.Clinical cancer research : an official journal of the American Association for Cancer Research · 2024Guideline
- Ethical aspects of human biobanks: a systematic review.Croatian medical journal · 2011Pooled it
- Pass the tissue: restoring researcher access to legal human donations.Journal of medical ethics · 2025Article
- Review
- Creating ethics guidelines for artificial intelligence and big data analytics customers: The case of the consumer European insurance market.Patterns (New York, N.Y.) · 2021Article
- What does engagement mean to participants in longitudinal cohort studies? A qualitative study.BMC medical ethics · 2021Article
- Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin.BMC medical ethics · 2021Article
- How Can We Not Waste Legacy Genomic Research Data?Frontiers in genetics · 2020Article
- Recontacting participants for expanded uses of existing samples and data: a case study.Genetics in medicine : official journal of the American College of Medical Genetics · 2017Article
- Participant views on consent in cancer genetics research: preparing for the precision medicine era.Journal of community genetics · 2016Article
- Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents.Journal of medical ethics · 2016Article
- Gene mutations responsible for primary immunodeficiency disorders: A report from the first primary immunodeficiency biobank in Iran.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2016Article
- Data sharing in large research consortia: experiences and recommendations from ENGAGE.European journal of human genetics : EJHG · 2014Article
- Bridging consent: from toll bridges to lift bridges?BMC medical genomics · 2011Article
- Biobanking and deceased persons.Human genetics · 2011Review
- Children, biobanks and the scope of parental consent.European journal of human genetics : EJHG · 2011Article
- Asia-Pacific Health 2020 and Genomics without Borders: Co-Production of Knowledge by Science and Society Partnership for Global Personalized Medicine.Current pharmacogenomics and personalized medicine · 2011Article
- Stem cell banking: between traceability and identifiability.Genome medicine · 2010Article
- Glad you asked: participants' opinions of re-consent for dbGap data submission.Journal of empirical research on human research ethics : JERHRE · 2010Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The rapid emergence of large-scale genetic databases raises issues at the nexus of medical law and ethics, as well as the need, at both national and international levels, for an appropriate and effective framework for their governance. This is even more so for retrospective access to data for secondary uses, wherein the original consent did not foresee such use. The first part of this paper provides a brief historical overview of the ethical and legal frameworks governing consent issues in biobanking generally, before turning to the secondary use of retrospective data in epidemiological biobanks. Such use raises particularly complex issues when (1) the original consent provided is restricted; (2) the minor research subject reaches legal age; (3) the research subject dies; or (4) samples and data were obtained during medical care. Our analysis demonstrates the inconclusive, and even contradictory, nature of guidelines and confirms the current lack of compatible regulations. The second part of this paper uses the European Network for Genetic and Genomic Epidemiology (ENGAGE Consortium) as a case study to illustrate the challenges of research using previously collected data sets in Europe. Our study of 52 ENGAGE consent forms and information documents shows that a broad range of mechanisms were developed to enable secondary use of the data that are part of the ENGAGE Consortium.
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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.