Human genome and human rights-clinical geneticist's point of view

The Human Genome Project was conceived, publicly supported and funded to improve human health. Since its inception in 1990, this project has committed 3-5% of the annual budget to study the ethical, legal, and social implication of genomic information. However, the first enthusiasm has been tempered by fear of misuse of our genetic information. To date, most of the attention has focused on genetic discrimination by employers and insurance companies, but genetic information is potentially valuable also to researchers and pharmaceutical concerns. The growing demands for privacy and the protection of genetic information, then, emerges directly from this growing commercialization. When the public appreciates the extent of use of genetic information for non medical purposes, it will only further exacerbate fear of discrimination and loss of privacy. Although these questions tend to be regulated by laws in some countries, the fear of discrimination, whether justified or not, has already had negative effects on genetic testing and genetic counseling services. The promise of genetic technologies lies in the future. It is impossible to predict the magnitude of the potential problem from our present experience. Once genetic information enters databases, it will be extremely hard to remove it or prevent disclosure. To protect people we would need: 1. Comprehensive legislation that addresses genetic discrimination and privacy in both the insurance and employment context. 2. Individual choice and autonomy in genetic counseling and genetic testing with emphasis on informed consent and clear explanation why is genetic testing different from other forms of medical test. 3. Public education concerning human genetics