ArticleBMC medical ethics2003
DNA databanks and consent: a suggested policy option involving an authorization model.
Article in BMC medical ethics, 2003. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 45 papers.
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
45 citing papers in PubMed.
- Action needed to address molecular HIV surveillance ethical concerns.Canadian journal of public health = Revue canadienne de sante publique · 2025Article
- Adding dynamic consent to a longitudinal cohort study: A qualitative study of EXCEED participant perspectives.BMC medical ethics · 2021Review
- A novel metadata management model to capture consent for record linkage in longitudinal research studies.Informatics for health & social care · 2019Article
- Health Research with Big Data: Time for Systemic Oversight.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2018Article
- Biomedical Big Data: New Models of Control Over Access, Use and Governance.Journal of bioethical inquiry · 2017Article
- An Assessment of a Shortened Consent Form for the Storage and Research Use of Residual Newborn Screening Blood Spots.Journal of empirical research on human research ethics : JERHRE · 2017Article
- Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.BMC medical ethics · 2017Article
- Community recommendations on biobank governance: Results from a deliberative community engagement in California.PloS one · 2017Article
- Secondary consent to biospecimen use in a prostate cancer biorepository.BMC research notes · 2016Article
- Research participants' perceptions and views on consent for biobank research: a review of empirical data and ethical analysis.BMC medical ethics · 2015Review
- EngageUC: Developing an Efficient and Ethical Approach to Biobanking Research at the University of California.Clinical and translational science · 2015Article
- Ethical considerations in biobanks: how a public health ethics perspective sheds new light on old controversies.Journal of genetic counseling · 2015Article
- Fair Shares and Sharing Fairly: A Survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking.PloS one · 2015Article
- Evaluating the consent preferences of UK research volunteers for genetic and clinical studies.PloS one · 2015Article
- Challenges in biobank governance in Sub-Saharan Africa.BMC medical ethics · 2013Review
- Broad consent versus dynamic consent in biobank research: is passive participation an ethical problem?European journal of human genetics : EJHG · 2013Article
- Biobanking research on oncological residual material: a framework between the rights of the individual and the interest of society.BMC medical ethics · 2013Article
- Incorporating exclusion clauses into informed consent for biobanking.Cambridge quarterly of healthcare ethics : CQ : the international journal of healthcare ethics committees · 2013Article
- Bioethical considerations in developing a biorepository for the Pneumonia Etiology Research for Child Health project.Clinical infectious diseases : an official publication of the Infectious Diseases Society of America · 2012Review
- A trade secret model for genomic biobanking.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2012Article
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundGenetic databases are becoming increasingly common as a means of determining the relationship between lifestyle, environmental exposures and genetic diseases. These databases rely on large numbers of research subjects contributing their genetic material to successfully explore the genetic basis of disease. However, as all possible research questions that can be posed of the data are unknown, an unresolved ethical issue is the status of informed consent for future research uses of genetic material. DISCUSSION: In this paper, we discuss the difficulties of an informed consent model for future ineffable uses of genetic data. We argue that variations on consent, such as presumed consent, blanket consent or constructed consent fail to meet the standards required by current informed consent doctrine and are distortions of the original concept. In this paper, we propose the concept of an authorization model whereby participants in genetic data banks are able to exercise a certain amount of control over future uses of genetic data. We argue this preserves the autonomy of individuals at the same time as allowing them to give permission and discretion to researchers for certain types of research. SUMMARY: The authorization model represents a step forward in the debate about informed consent in genetic databases. The move towards an authorization model would require changes in the regulatory and legislative environments. Additionally, empirical support of the utility and acceptability of authorization is required.
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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.