Wylie Jean E, Mineau Geraldine P
Utah Resource for Genetic and Epidemiologic Research, 30 North 1900 East, University of Utah, Salt Lake City, UT 84132-2116, USA.
Trends Biotechnol. 2003 Mar;21(3):113-6. doi: 10.1016/S0167-7799(02)00039-2.
When combined with medical information, large electronic databases of information that identify individuals provide superlative resources for genetic, epidemiology and other biomedical research. Such research resources increasingly need to balance the protection of privacy and confidentiality with the promotion of research. Models that do not allow the use of such individual-identifying information constrain research; models that involve commercial interests raise concerns about what type of access is acceptable. Researchers, individuals representing the public interest and those developing regulatory guidelines must be involved in an ongoing dialogue to identify practical models.
当与医学信息相结合时，能识别个人身份的大型电子信息数据库为基因、流行病学及其他生物医学研究提供了绝佳资源。此类研究资源越来越需要在保护隐私和保密与推动研究之间取得平衡。不允许使用此类个人身份识别信息的模式会限制研究；涉及商业利益的模式引发了关于何种访问类型可接受的担忧。研究人员、代表公众利益的个人以及制定监管指南的人员必须参与持续对话，以确定切实可行的模式。
