期刊
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS
卷 12, 期 5, 页码 310-325出版社
SAGE PUBLICATIONS INC
DOI: 10.1177/1556264617723137
关键词
biobanks; transparency; access policies; industry access; commercialization
资金
- Genome Canada grant on Ethical and Legal Issues of Cancer Initiating Stem Cell Research
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.
作者
我是这篇论文的作者
点击您的名字以认领此论文并将其添加到您的个人资料中。
推荐
暂无数据