Transparency of Biobank Access in Canada: An Assessment of Industry Access and the Availability of Information on Access Policies and Resulting Research.
J Empir Res Hum Res Ethics
; 12(5): 310-325, 2017 12.
Article
em En
| MEDLINE
| ID: mdl-28818009
ABSTRACT
A key issue impacting public trust in biobanks is how these resources are utilized, including who is given access to biobank data and samples. To assess the conditions under which researchers are given access to Canadian biobanks, we reviewed websites and contacted Canadian biobanks to determine the availability of information on access policies and procedures; research resulting from access biobank data and samples; and conditions on private industry access to biobanks. We also conducted expert interviews with key Canadian stakeholders ( n = 11) to obtain their perspectives on biobank transparency and access policies. Among 21 Canadian biobanks, there was wide variation in the access information made publicly available, and the majority of these allowed access by industry applicants. Biobanks should be governed by the principles of transparency, accountability, and accessibility, and attention must be given to the conditions around the commercialization of biobank-based research.
Palavras-chave
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Responsabilidade Social
/
Bancos de Espécimes Biológicos
/
Comércio
/
Acesso à Informação
/
Pesquisa Biomédica
/
Políticas
/
Indústrias
Tipo de estudo:
Prognostic_studies
Limite:
Humans
País/Região como assunto:
America do norte
Idioma:
En
Revista:
J Empir Res Hum Res Ethics
Assunto da revista:
ETICA
Ano de publicação:
2017
Tipo de documento:
Article
País de afiliação:
Canadá