ABSTRACT

Banking of biological specimens for the purpose of genetic analysis is useful for diagnosis, therapeutic consideration and preventative efforts in medical genetics services, and offers possibilities for research that may lead to important new progress, including new possibilities for treatment of serious diseases. Comparison between groups of patients with different mutations in clinically relevant gene could lead to identification of distinct clinical pictures, specific to different mutations in same gene. The need for banking of test results and samples is long term, and DNA samples should not be destroyed as long as they could be useful for genetic services or research. The most serious ethical issue in connection with 'genetic banking' is the risk of discrimination against tested persons. The Human Genetics Programme of the World Health Organization has worked on ethical problems related to research in medical genetics and genetic services for many years and issued major discussion document in 1995 that has been widely read and commented upon.