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
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