Revise HIPAA: Health researchers

A rule meant to protect the privacy of medical patients impedes critical health research by limiting access to stored tissue and genetic datasets and by hampering research participant recruitment, according to an Association of Academic Health Centers (AAHC) linkurl:report;http://www.aahcdc.org/policy/reddot/AAHC_HIPAA_Creating_Barriers.pdf released yesterday (Jun 16). This sentiment echoes linkurl:concerns;http://www.the-scientist.com/blog/display/53866/ previously voiced by US epidemiologists,

Bob Grant
Bob Grant

Bob Grant is Editor in Chief of The Scientist, where he started in 2007 as a Staff Writer.

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Jun 16, 2008
A rule meant to protect the privacy of medical patients impedes critical health research by limiting access to stored tissue and genetic datasets and by hampering research participant recruitment, according to an Association of Academic Health Centers (AAHC) linkurl:report;http://www.aahcdc.org/policy/reddot/AAHC_HIPAA_Creating_Barriers.pdf released yesterday (Jun 16). This sentiment echoes linkurl:concerns;http://www.the-scientist.com/blog/display/53866/ previously voiced by US epidemiologists, who linkurl:said;http://jama.ama-assn.org/cgi/reprint/298/18/2164.pdf the Privacy Rule of the Health Insurance Portability and Accountability Act (HIPAA) has made their research more difficult to conduct since its enactment in 2003. The AAHC convened focus groups at several US academic medical centers, and researchers and administrators there said that HIPAA increased administrative burden with additional paperwork, created confusion over the rule's ambiguous wording, and made it harder for investigators to identify eligible study participants by reviewing their medical records. The red tape created by the rule was particularly detrimental to studies involving stored tissues and linkurl:genetic datasets.;http://www.the-scientist.com/news/display/53554/ Because HIPAA makes it more...

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