ReviewBMC genomics2017
Consent, ethics and genetic biobanks: the case of the Athlome project.
Review in BMC genomics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 1 of them a synthesis 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
12 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Towards a Design Toolkit of Informed Consent Models Across Fields: A Systematic Review.Science and engineering ethics · 2022Pooled it
- Lessons Learned in Clinical Trial Recruitment: A Partnership Between a Genomic Research Study and the Discover Together Biobank.Biopreservation and biobanking · 2026Review
- Article
- Verbal consent in biomedical research: moving toward a future standard practice?Frontiers in genetics · 2025Review
- Broad consent for biobank research in South Africa - Towards an enabling ethico-legal framework.Global bioethics = Problemi di bioetica · 2024Article
- Data altruism and the "consent" question: a study into the "consent" models used under the GDPR and how the data altruism mechanism can act as a potential solution for the research community in the reuse of health data.Frontiers in medicine · 2024Review
- A Preliminary Study to Explore the Informed Consent Approach and the Ethical Challenges in the Malaysian Biobanking for Research.Asian bioethics review · 2023Article
- Perceptions, attitudes, and willingness of the public in low- and middle-income countries of the Arab region to participate in biobank research.BMC medical ethics · 2022Article
- Informed consent practices for exome sequencing: An interview study with clinical geneticists in the Netherlands.Molecular genetics & genomic medicine · 2022Article
- Ethical Issues in Consent for the Reuse of Data in Health Data Platforms.Science and engineering ethics · 2021Article
- Knowledge, perceptions and attitude of Egyptian physicians towards biobanking issues.PloS one · 2021Article
- Informed Consent Form Challenges for Genetic Research in Jordan.Journal of multidisciplinary healthcare · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This article provides a critical overview of the ethics and governance of genetic biobank research, using the Athlome Consortium as a large scale instance of collaborative sports genetic biobanking. We present a traditional model of written informed consent for the acquisition, storage, sharing and analysis of genetic data and articulate the challenges to it from new research practices such as genetic biobanking. We then articulate six possible alternative consent models: verbal consent, blanket consent, broad consent, meta consent, dynamic consent and waived consent. We argue that these models or conceptions of consent must be articulated in the context of the complexities of international legislation and non legislative national and international biobank governance frameworks and policies, those which govern research in the field of sports genetics. We discuss the tensions between individual rights and public benefits of genomic research as a critical ethical issue, particularly where benefits are less obvious, as in sports genomics. The inherent complexities of international regulation and biobanking governance are challenging in a relatively young field. We argue that there is much nuanced ethical work still to be done with regard to governance of sports genetic biobanking and the issues contained therein.
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What 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.