But regardless of what the public heard or read repeatedly, only workers (or their dependents) with such conditions are affected by the law. For workers who lose group coverage and need individual policies, the law sets up formidable hurdles. So far, says an aide to Congressman Pete Stark, a California Democrat active in health reform, "Anyone who calls this office falls outside the bill" (Lieberman, 1997, p. 50).
Epstein (2002) notes some of the unintended consequences of HIPAA with reference to medical research. He cites the provisions on privacy and finds a conflict "between the concern for privacy on the one hand, and the ability of medical scientists, physicians, and institutions to continue on with their traditional research activities" (Epstein, 2002).
Under the new rules, it is assumed that everyone needs to obtain consent for the disclosure or use of any particular medical record for any kind of purpose, and when HIPAA does distinguish among purposes, it does so based on the needs of the individual. In terms of medical research, there are no direct patient benefits involved but only more general benefits for everyone, so the regulations impose tougher requirements on disclosure. This can make the process more difficult and even impossible in some situations.
A major issue with HIPAA has been compliance and with meeting the deadlines for compliance by protecting patient records and assuring that needed information was preserved in the proper manner. Another issue has been preventing fraud, with rules on accountability...
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