A Discussion Paper 3.6 Genetic Records and Databases Systematic collection of genetic information is important for monitoring, evaluating, auditing and quality control of genetic testing and other genetic services. Such data may also be used to facilitate the management of family members if surveillance can lead to useful treatment. Collecting data and samples from a large number of families is a critical resource for research into identifying genes that predispose to, or protect from, common disease. Existing genetic registers record information on individuals with specific genetic disorders, and may include relatives at risk of developing or transmitting the genetic disorder. What information is stored varies extensively between registers.
Genetic registers can be the starting point for genetic testing.
The guidelines and background material are 'non prescriptive and place relatively few constraints on the way the keepers of registers may handle the personal information they contain. Currently these guidelines only address the use of registers, not their establishment and maintenance. Regulatory mechanisms for strict codes of practice may need to be considered for protecting individual privacy. It will be important that practice guidelines ensure that individuals who provide consent to be registered on genetic databases are aware that this information will be stored for a long period of time. Any subsequent use of this information for other tests or research should also seek informed consent of the registrants.