International guidelines for privacy in genomic biobanking (or the unexpected virtue of pluralism)
Abstract
This article reviews international privacy norms governing human genomic biobanks and databases, and how they address issues related to consent, secondary use, de- identification, access, security, and governance. A range of international instruments were identified, varying in substance - e.g., human rights, data protection, research ethics, biobanks, and genetics - and legal character. Some norms detail processes for broad consent, namely, that even where potential participants cannot consent to specific users and uses, they should be given clear information on access policies, procedures, and governance structures. Some also give guidance about the conditions under which secondary use of data and samples without consent is appropriate, e.g., where consent is impracticable. International norms exhibit a confusing range of terminology relating to de-identification. They also continue to rely heavily on consent and anonymity as the basis for privacy protection, though governance is becoming more prominent. It may not be fatal that such a plurality of norms apply to biobanking; what is essential is that governance be built on shared values, our common interest in the success of genomic research, and practical tools that incentivize responsible, global sharing.
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Increases in DNACPR decisions and especially use of blanket CPR exclusion criteria such as age may introduce selection bias and hamper the generalisability of the research results, as well as their applicability to normal conditions.
“Lastly, increases in DNACPR decisions and especially use of blanket CPR exclusion criteria such as age 87,88,385,390,393 may introduce selection bias and hamper the generalisability of the research results, as well as their applicability to normal conditions.”
From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [385]
COVID-19 case surges may cause disruption over a wide spectrum of societal and healthcare system activities.
“COVID-19 case surges may cause disruption over a wide spectrum of societal and healthcare system activities. 1,385 387”
From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [385]
Delays in CPR initiation due to donning of personal protective equipment may impact patient outcomes, and thereby modify the measured effect of concurrent or subsequent, investigational, resuscitative interventions, such as new drug therapies, or temperature/ventilatory management during and/or after resuscitation.
“Delays in CPR initiation due to donning of personal protective equipment may impact patient outcomes, 385,386,388 and thereby modify the measured effect of concurrent or subsequent, investigational, resuscitative interventions, such as new drug therapies, or temperature/ventilatory management during and/or after resuscitation.”
From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [385]
Cites
The tension between data sharing and the protection of privacy in genomics research
Kaye, J. (2012) · Annual Review of Genomics and Human Genetics · doi:10.1146/annurev-genom-082410-101454 · Cited by 240 · see citing works
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European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions
Mentzelopoulos, S. D., Couper, K., Voorde, P. V. D., Druwé, P., Blom, M., Perkins, G. D., Lulic, I., Djakow, J., Raffay, V., Lilja, G., et al. (2021) · Resuscitation · doi:10.1016/j.resuscitation.2021.02.017 · Cited by 246 · see citing works
Benefits and barriers in the design of harmonized access agreements for international data sharing
Saulnier, K. M., Bujold, D., Dyke, S. O. M., Dupras, C., Beck, S., Bourque, G., & Joly, Y. (2019) · Scientific Data · doi:10.1038/s41597-019-0310-4 · Cited by 32 · see citing works
- Authors
- Thorogood, A., & Zawati, M. H.
- Affiliations
- McGill University (CA)
- Venue
- Journal of Law, Medicine & Ethics
- Publisher
- Cambridge University Press (CUP)
- Published
- 2015
- Volume
- 43
- Issue
- 4
- Pages
- 690-702
- ISSN
- 1073-1105 (ISSN-L)
- 1748-720X
- OpenAlex
- W2209511974
- Cited by
- 48
- References
- 1
- Citations by year
- 2024: 1 · 2023: 4 · 2022: 6 · 2021: 22 · 2020: 1 · 2019: 5 · 2018: 1 · 2017: 4 · 2016: 3 · 2015: 1
- FWCI
- 3.57
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- The Journal of Law Medicine & Ethics (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Human Genome Research Institute (R01HG006838)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Medical and Health Sciences Research
- Keywords
- privacy, broad consent, data reuse, de-identification, biobank governance, data protection, research ethics, human rights, anonymity, data security
- MeSH terms
- Humans, Informed Consent, Biological Specimen Banks, Access to Information, Databases, Genetic, Genetic Privacy, Genetic Research, Internationality
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