ABSTRACT

Human genomic information is invested with enormous power in a scientifically motivated society. Genomic information has the capacity to produce a great deal of good for society. It can help identify and understand the etiology and pathophysiology of disease. In so doing, medicine and science can expand the ability to prevent and ameliorate human malady through genetic testing, treatment, and reproductive counseling. Genetic testing and screening are likely to become an important part of longitudinal clinical records. The principal forms include: fetal (prenatal), newborn, carrier, and clinical (primary care) screening. Genetic data bases are held in both the private and public sector for clinical, research, and public health purposes. Despite substantial progress in the Human Genome Initiative, a great deal more must be understood about the detection, prevention, and treatment of genetic disease. Adoption of different privacy and security rules for genomic data could pose practical problems in our health information infrastructure.