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Biobanking and deceased persons

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Abstract

Early biomedical research focused primarily on the study of specific diseases or sets of diseases within small groups of living research participants. Accordingly, the first ethical frameworks governing biomedical research addressed short-term, limited-scope research involving living research participants. Due to recent interest in longitudinal population studies and biobanking, research is increasingly long term. This shift raises several ethical and legal issues concerning the impact of a participant’s death on research. This paper offers an overview of these issues in the context of longitudinal biobanking genetic research. Our first part outlines the legal and ethical frameworks that govern the effect of the participants’ death on consent. This will be followed by an analysis of the legal and ethical frameworks that govern the secondary use of deceased participants’ data and samples and the return of deceased participants’ individual research results to biological family members. In our second part, we will review the current literature and discuss the above mentioned issues using the bioethics “principlism” theory before concluding.

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Notes

  1. Canadian Legal Information Institute-CanLII, available through http://www.canlii.org/en/.

  2. USA.Gov, available through http://www.usa.gov/Topics/Reference_Shelf/Laws.shtml.

  3. HumGen International, available through http://www.humgen.org/int/.

  4. Council of Europe, available through http://conventions.coe.int/.

  5. Pubmed, available through http://www.ncbi.nlm.nih.gov/pubmed.

  6. Google Scholar, available through http://scholar.google.ca/.

  7. European Network for Genetic and Genomic Epidemiology, available through http://www.euengage.org/.

  8. CARTaGENE, available through http://www.cartagene.qc.ca.

  9. UK Biobank, available through http://www.ukbiobank.ac.uk.

  10. State or provincial laws and regulations were not part of this review.

  11. Consent forms and information documents of 54 biobanks were analyzed, including 52 biobanks members of the ENGAGE consortium (http://www.euengage.org/), the Canadian CARTaGENE project (http://www.cartagene.qc.ca) and the UK Biobank (http://www.ukbiobank.ac.uk).

  12. CARTaGENE, available through http://www.cartagene.qc.ca/.

  13. CARTaGENE Brochure, CARTaGENE, available through http://www.cartagene.qc.ca/images/stories/cartagene_brochure.pdf.

  14. UK Biobank, available through http://www.ukbiobank.ac.uk/.

  15. UK Biobank, available through http://www.ukbiobank.ac.uk/faqs.php.

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Acknowledgments

This research was supported through funds from the European Community’s Seventh Framework Programme (FP7/2007-2013) ENGAGE Consortium, grant agreement HEALTH-F4-2007-201413 and the European Community’s Seventh Framework Programme (FP7/2010-2015) BioSHaRE grant agreement FP7-HEALTH 261433. The author would like to thank Michael Le Huynh for assistance in editing the text.

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The author declares no conflict of interest.

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  1. McGill University, 740, Dr Penfield Ave. suite 5202, Montreal, QC, H3A 1A4, Canada

    Anne Marie Tassé

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Correspondence to Anne Marie Tassé.

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Tassé, A.M. Biobanking and deceased persons. Hum Genet 130, 415–423 (2011). https://doi.org/10.1007/s00439-011-1049-y

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