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Rules on Patients' Medical Data Hampering Research
Date:11/13/2007

In survey, most scientists said current laws are too cumbersome

TUESDAY, Nov. 13 (HealthDay News) -- Regulators may be going too far in their efforts to protect human research subjects, a new survey of research scientists suggests.

Two-thirds of doctors recently surveyed said that the Health Insurance Portability and Accountability Act (HIPAA), which oversees the release of patients' medical information, has hindered research. Only one-quarter felt the new rules had actually enhanced patients' confidentiality and privacy.

"According to the scientists surveyed, HIPAA is slowing and adding cost to clinical and population research. This has the potential to delay important research findings," said Dr. Roberta B. Ness, the study's lead author and chair of the department of epidemiology at the University of Pittsburgh Graduate School of Public Health.

"The pendulum has been swinging for decades and is continuing at light speed. There is no sign of it swinging back," added Dr. Norman Fost, author of an accompanying editorial and chair of the Institution Review Board at the University of Wisconsin School of Medicine and Public Health in Madison.

The study is published in the Nov. 14 issue of the Journal of the American Medical Association.

The original intent of the 1996 HIPAA Privacy Rule was to allow consumers to carry their insurance from job to job. But the final version tilts more toward protecting the privacy of medical records and information.

"Currently, an Institute of Medicine/National Academies panel is considering what suggested actions should be taken," Ness noted. "These may include suggesting changes in the rule or better guidance and implementation. That report should be out next summer or fall."

According to background information in this paper, HIPAA was supposed to find a balance between protecting individuals' privacy and allowing the use and disclosur
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