The Deceased, Public Health, and Research: Proposing Legal Reforms.

biobank data protection law privacy law public health research data research ethics

Journal

Biopreservation and biobanking
ISSN: 1947-5543
Titre abrégé: Biopreserv Biobank
Pays: United States
ID NLM: 101507284

Informations de publication

Date de publication:
09 Nov 2023
Historique:
medline: 9 11 2023
pubmed: 9 11 2023
entrez: 9 11 2023
Statut: aheadofprint

Résumé

There is little guidance concerning biomedical research using tissues from deceased individuals. Unique ethical and legal challenges gained visibility during the coronavirus disease 2019 (COVID-19) pandemic, when important studies using genome sequencing required access to biological materials from deceased individuals. These studies proposed to determine whether specific genomic profiles were associated with important disease outcomes. Such research has previously required consent from next-of-kin or other surrogate decision makers. Ethics waivers for such consent vary within Canada. In Ontario, research ethics boards can grant waivers of consent if the Tri-Council Policy Statement-2 conditions are met. These include that the individual is not harmed, that the materials are essential to the research, and that privacy will be protected. Conversely, in Quebec,

Identifiants

pubmed: 37943606
doi: 10.1089/bio.2023.0026
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Auteurs

Isabel Baltzan (I)

McGill University Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine and Health Sciences, Montreal, Canada.

Bartha Maria Knoppers (BM)

McGill University Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine and Health Sciences, Montreal, Canada.

Elisheva Tamar Anne Nemetz (ETA)

University of Toronto Temerty Faculty of Medicine, Toronto, Canada.

Jordan Lerner-Ellis (J)

Pathology and Laboratory Medicine, Mount Sinai Hospital, Sinai Health and Lunenfeld Tanenbaum Research Institute, Sinai Health, Toronto, Canada.

Alexander Bernier (A)

McGill University Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine and Health Sciences, Montreal, Canada.

Karen Devon (K)

Department of Surgery and Joint Centre for Bioethics, University of Toronto and Women's College Hospital and University Health Network, Toronto, Canada.

Classifications MeSH