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HIPAA privacy rule fails to adequately protect patient privacy and hampers health research
Date:2/4/2009

rovide ethical oversight of research in which use of personally identifiable information without individual consent is necessary. This oversight could be accomplished by local ethical review boards that assess proposed projects on a case-by-case basis, or institutions could be certified at the federal level to carry out this kind of research, having proved they have policies and practices in place to protect data privacy and ensure security.

If the current HIPAA Privacy Rule continues to be the means for safeguarding privacy in health-related research, the committee recommended several ways to revise the rule and its guidance on compliance. For example, HHS should make it clear that people can grant permission in advance that samples or data collected from them for one research project can be used in future research. And the agency should simplify and clarify the criteria for making decisions about waiving requirements to obtain permission from every patient whose personal health information will be used in study.


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Contact: Christine Stencel
news@nas.edu
202-334-2138
National Academy of Sciences
Source:Eurekalert

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