Resource Center: genetic testing, ethics

Advances in genetic research promise great strides in the diagnosis and treatment of many childhood diseases. However, emerging genetic technology often enables testing and screening before the development of definitive treatment or preventive measures. In these circumstances, careful consideration must be given to testing and screening of children to ensure that use of this technology promotes the best interest of the child. This statement reviews considerations for the use of genetic technology for newborn screening, carrier testing, and testing for susceptibility to late-onset conditions. Recommendations are made promoting informed participation by parents for newborn screening and limited use of carrier testing and testing for late-onset conditions in the pediatric population. Additional research and education in this developing area of medicine are encouraged. (From Their Website)

Dr. Duncan speaks about genetic testing and young people.

John B. Moeschler, MD, Michael Shevell, MD article published in the Pediatrics Journal

The Human Genome Project website provides a review of Genetics Privacy and Legislation, including discussion of existing federal and state legislation, proposed bills, and future recommendations.

This is a website providing helpful information about general genetics, the genetic testing process, and ethical and legal issues related to genetic diagnosis, research participation, resources, and managing your risk. The site also has information describing a few adult-onset genetic conditions.

This website contains information about the Human Genome Project and also provides free online educational materials.