Standards for Privacy of Individually Identifiable Health Information. Final Privacy Rule Preamble.. Advances in Genetic Sciences


Recently, scientists completed nearly a decade of work unlocking the mysteries of the human genome, creating tremendous new opportunities to identify and prevent many of the leading causes of death and disability in this country and around the world. Yet the absence of privacy protections for health information endanger these efforts by creating a barrier of distrust and suspicion among consumers. A 1995 national poll found that more than 85 percent of those surveyed were either "very concerned" or "somewhat concerned" that insurers and employers might gain access to and use genetic information. See Harris Poll, 1995 #34. Sixty-three percent of the 1,000 participants in a 1997 national survey said they would not take genetic tests if insurers and employers could gain access to the results. See "Genetic Information and the Workplace," Department of Labor, Department of Health and Human Services, Equal Employment Opportunity Commission, January 20, 1998. "In genetic testing studies at the National Institutes of Health, thirty-two percent of eligible people who were offered a test for breast cancer risk declined to take it, citing concerns about loss of privacy and the potential for discrimination in health insurance." Sen. Leahy's comments for March 10, 1999 Introduction of the Medical Information Privacy and Security Act.