Genetic privacy and academic medicine: the Oregon experience

Legislators are considering the conflicting concerns of consumers, researchers, health care providers, and business in the rapidly developing area of genetics. The Oregon Genetic Privacy Act of 1995 was written to protect the individual's right to genetic privacy by providing legal protection for medical information, tissue samples, and DNA samples. This legislation has had an impact on the academic medical center of Oregon Health Sciences University (OHSU) with its teaching hospital and associated clinics, both in providing medical services and in research. This impact has occurred in several areas: (1) informed consent, (2) ownership of genetic information, and (3) security of medical information. It affects both patient care and research. OHSU and other academic medical centers have a mandate to provide leadership in the education of medical students, residents, and physicians about genetic privacy and the issues and areas affected by it. As genetic privacy legislation is developed and enacted at state and federal levels, the needs of individuals must be balanced with the needs of institutions and of research in the larger context of societal needs.