ArticleEuropean journal of human genetics : EJHG2014
Incidental findings: the time is not yet ripe for a policy for biobanks.
Article in European journal of human genetics : EJHG, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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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.
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Who cites it
14 citing papers in PubMed.
- Communicating BRCA research results to patients enrolled in international clinical trials: lessons learnt from the AGO-OVAR 16 study.BMC medical ethics · 2016Trial
- When genomics companies act as biobanks: governance challenges in an era of genomic assetization.Frontiers in genetics · 2026Article
- GBA/GBN-position on the feedback of incidental findings in biobank-based research: consensus-based workflow for hospital-based biobanks.European journal of human genetics : EJHG · 2023Article
- Observational
- A survey of aortic disease biorepository participants' preferences for return of research genetic results.Journal of genetic counseling · 2021Article
- Germline mutations in BRCA1 and BRCA2 incidentally revealed in a biobank research study: experiences from re-contacting mutation carriers and relatives.Journal of community genetics · 2018Article
- Legal & ethical compliance when sharing biospecimen.Briefings in functional genomics · 2018Article
- A Systematic Review of the Management of Incidental Findings in Genomic Research.BEOnline : journal of the West African bioethics training program · 2016Article
- Impact of whole-body MRI in a general population study.European journal of epidemiology · 2016Article
- The Swedish CArdioPulmonary BioImage Study: objectives and design.Journal of internal medicine · 2015Observational
- Research participants in NGS studies want to know about incidental findings.European journal of human genetics : EJHG · 2015Article
- The EuroBioBank Network: 10 years of hands-on experience of collaborative, transnational biobanking for rare diseases.European journal of human genetics : EJHG · 2015Article
- Governing the research-care divide in clinical biobanking: Dutch perspectives.Life sciences, society and policy · 2015Review
- Evaluating the consent preferences of UK research volunteers for genetic and clinical studies.PloS one · 2015Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Incidental findings (IFs) are acknowledged to be among the most important ethical issues to consider in biobank research. Genome-wide association studies and disease-specific genetic research might reveal information about individual participants that are not related to the research purpose, but may be relevant to those participants' future health. In this article, we provide a synopsis of arguments for and against the disclosure of IFs in biobank research. We argue that arguments that do not distinguish between communications about pathogenic conditions and complex genetic risk for diseases fail, as preferences and decisions may be far more complex in the latter case. The principle of beneficence, for example, often supports the communication of incidentally discovered diseases, but if communication of risk is different, the beneficence of such communication is not equally evident. By conflating the latter form of communication with the former, the application of ethical principles to IFs in biobank research sometimes becomes too easy and frictionless. Current empirical surveys of people's desire to be informed about IFs do not provide sufficient guidance because they rely on the same notion of risk communication as a form of communication about actual health and disease. Differently designed empirical research and more reflection on biobank research and genetic risk information is required before ethical principles can be applied to support the adoption of a reasonable and comprehensive policy for handling IFs.
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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.