HIPAA Creating Barriers to Research and Discovery

The Association of Academic Health Centers has released a paper that concludes that HIPAA is a significant obstacle to biomedical research. From their paper [pdf]:


In order to ensure that American science can flourish, there is a need to address HIPAA-related
barriers that are impeding research. The AAHC recommends the following:

  • The Department of Health and Human Services (DHHS) should revise the HIPAA Privacy Rule to allow it to defer to the Common Rule in matters of protecting the privacy of protected health information of research participants. Existing Common Rule guidelines already protect health information, and if an IRB believes that extra protection is warranted, it can require a Certificate of Confidentiality. Such revisions should be carried out through the DHHS Office of Civil Rights through their policy change mechanism.
  • The Office for Human Research Protections (OHRP) should provide updated guidance to emphasize the importance of preserving the privacy of protected health information (PHI). OHRP guidance has the effect of federal rule for IRBs and this unequivocal guidance from them would ensure that the HIPAA deferral to the Common Rule would not sacrifice any increment of PHI protection.
  • Congress should implement a national genetic privacy act (GPA) or include a GPA in a revision of HIPAA. Implementation of a national GPA could help resolve the current conflicts and confusion over differences in state genetic privacy acts and HIPAA, which are currently hampering tissue bank and genetic dataset research.

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