ArticleEuropean journal of human genetics : EJHG2009
Changing perspectives in biobank research: from individual rights to concerns about public health regarding the return of results.
Article in European journal of human genetics : EJHG, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 35 papers, 2 of them syntheses that pooled it.
What it found
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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
35 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- The research participant perspective related to the conduct of genomic cohort studies: A systematic review of the quantitative literature.Translational behavioral medicine · 2018Pooled it
- Ethical aspects of human biobanks: a systematic review.Croatian medical journal · 2011Pooled it
- Community perspectives on the return of research results and ownership of data and specimens for brain tumor genomic research.SSM. Qualitative research in health · 2026Article
- Biobanks-A Platform for Scientific and Biomedical Research.Diagnostics (Basel, Switzerland) · 2020Review
- Managing "incidental findings" in biobank research: Recommendations of the Taiwan biobank.Computational and structural biotechnology journal · 2019Review
- Challenges that face the establishment of diabetes biobank in Jordan: a qualitative analysis of an online discussion forum.Journal of multidisciplinary healthcare · 2019Article
- Translating Biobank Science into Patient-Centered Language.Biopreservation and biobanking · 2018Article
- The Ethics of General Population Preventive Genomic Sequencing: Rights and Social Justice.The Journal of medicine and philosophy · 2018Article
- Controversies among Cancer Registry Participants, Genomic Researchers, and Institutional Review Boards about Returning Participants' Genomic Results.Public health genomics · 2018Article
- Returning Results: Let's Be Honest!Genetic testing and molecular biomarkers · 2017Article
- Public participation in genetic databases: crossing the boundaries between biobanks and forensic DNA databases through the principle of solidarity.Journal of medical ethics · 2015Article
- Managing the Ethical Issues of Genomic Research using Pathology Specimens.The Clinical biochemist. Reviews · 2015Article
- Collectivizing rescue obligations in bioethics.The American journal of bioethics : AJOB · 2015Article
- Return of Genetic Research Results to Participants and Families: IRB Perspectives and Roles.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
- Factors influencing public participation in biobanking.European journal of human genetics : EJHG · 2014Article
- Incidental findings: the time is not yet ripe for a policy for biobanks.European journal of human genetics : EJHG · 2014Article
- Returning findings within longitudinal cohort studies: the 1958 birth cohort as an exemplar.Emerging themes in epidemiology · 2014Article
- Returning individual research results for genome sequences of pancreatic cancer.Genome medicine · 2014Article
- Finding ways to improve the use of biobanks.Nature medicine · 2013Article
- REXIC Project: Retrospective Cross-Sectional Study of Documentation of Informed Consent for Research Biobanking in A Public Research and Teaching Hospital.Journal of public health research · 2013Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
During the past decade, various guidelines that imply a duty for researchers to disclose information obtained through research to participants have emerged. The character and extent of this obligation have been debated extensively, with much attention devoted to the decisiveness of the validity and utility of the results in question. The aim of this paper is to argue that individual results from research on materials stored in large-scale biobanks, consisting of samples taken within the healthcare system or of altruistically donated materials, should not be returned. We will defend the thesis that medical research on these biobanks should be viewed as a collective project to improve public health, and that available resources should be utilized to pursue this goal. We argue that there is a need for a change of perspectives. Medical research should not primarily be viewed as a danger that individuals must be protected from, but rather be recognized as constituting a necessary defense against current and future diseases. Research that bears the prospect of advancing medicine and that can be carried out at no risk to individuals should be endorsed and facilitated. This calls for a shift of focus from autonomy and individual rights toward collective responsibility and solidarity.
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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.