Barriers set up to protect genome databases

Bjorn, Genevive

doi:10.1038/nm1008-996b

Cited by 3 publications

(2 citation statements)

References 1 publication

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“…The risk of privacy breaches is increased relative to non-biobank studies, because of the long-term storage of biological materials and information, and the rationale of biobanks to facilitate health research by sharing resources with as many researchers as possible. Attempts to anonymise data in genomic biobanks, in particular, are hampered by the fact that DNA is a unique identifier of individuals (Bjorn 2008;Lowrance and Collins 2007) and even methods that only allow for aggregated anonymized information to be made available to researchers must allow for the fact that computational advances may always show existing safeguards to be insufficient (e.g., Homer et al 2008). …”

Section: Privacymentioning

confidence: 99%

Ethically sustainable governance in the biobanking of eggs and embryos for research

Stroud

O’Doherty

2015

Monash Bioeth. Rev.

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Biobanking of human tissues is associated with a range of ethical, legal, and social (ELS) challenges. These include difficulties in operationalising informed consent protocols, protecting donors' privacy, managing the return of incidental findings, conceptualising ownership of tissues, and benefit sharing. Though largely unresolved, these challenges are well documented and debated in academic literature. One common response to the ELS challenges of biobanks is a call for strong and independent governance of biobanks. Theorists who argue along these lines suggest that since fully informed consent to a single research project is often not feasible, research participants should be given the additional protection of being allowed to consent to the governance framework of the biobank. Such governance therefore needs to be transparent and ethically sustainable. In this paper we review the governance challenges of establishing and maintaining human tissue biobanks. We then discuss how the creation of a biobank for eggs and embryos, in particular, may introduce additional or unique challenges beyond those presented by the biobanking of other human tissues. Following previous work on biobank governance, we argue that ethically sustainable governance needs to be participatory, adaptive, and trustworthy.

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Section: Privacymentioning

confidence: 99%

Ethically sustainable governance in the biobanking of eggs and embryos for research

Stroud

O’Doherty

2015

Monash Bioeth. Rev.

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“…Sharing of samples and data across national boundaries means that security measures implemented to protect participants in the source jurisdiction may not be enforceable in other jurisdictions. As DNA is by its very nature a unique identifier of individuals, cohorts involved in genomic studies face the challenge that even aggregation of donors' data is no longer sufficient to protect against the identification of an individual's participation in a given study [19][20][21]. Traditional informed consent protocols cannot be applied in many cases as re-consenting participants for different studies may not be possible or financially prohibitive, and no consensus has yet emerged as to ethically acceptable alternatives.…”

Section: Balancing Data Sharing and Privacy Of Genomic And Epidemiolomentioning

confidence: 99%

Cohorts and consortia conference: a summary report (Banff, Canada, June 17–19, 2009)

Boffetta

Colditz

Potter

et al. 2011

Cancer Causes Control

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Epidemiologic studies have adapted to the genomics era by forming large international consortia to overcome issues of large data volume and small sample size. Whereas both cohort and well-conducted case-control studies can inform disease risk from genetic susceptibility, cohort studies offer the additional advantages of assessing lifestyle and environmental exposure-disease time sequences often over a life course. Consortium involvement poses several logistical and ethical issues to investigators, some of which are unique to cohort studies, including the challenge to harmonize prospectively collected lifestyle and environmental exposures validly across individual studies. An open forum to discuss the opportunities and challenges of large-scale cohorts and their consortia was held in June 2009 in Banff, Canada, and is summarized in this report.

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From consent to institutions: Designing adaptive governance for genomic biobanks

O’Doherty

Burgess

Edwards

et al. 2011

Social Science & Medicine

144

119

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Barriers set up to protect genome databases

Cited by 3 publications

References 1 publication

Ethically sustainable governance in the biobanking of eggs and embryos for research

Ethically sustainable governance in the biobanking of eggs and embryos for research

Cohorts and consortia conference: a summary report (Banff, Canada, June 17–19, 2009)

From consent to institutions: Designing adaptive governance for genomic biobanks

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