Beschrijving

Deals with the consequences of human genome research and especially problems in diagnosis and counseling, freedom of choices, patient autonomy, informed consent, confidentiality of genetic information, privacy, social discrimination and stigmatization.

The ultimate goals of human genome research are the treatment, cure and eventual prevention of genetic disorders but treatment and cure lag behind the ability to detect disease or increased suceptibility to disease. Most genetic services today deliver diagnosis and counseling, effective treatment is rare. As more genes are identified there is growing pressure to implement new testing programs or broaden existing programs and otherwise increase both the number of available genetic tests and the amount of genetic information. The main issues concerned among others are: voluntariness of services, freedom of choices, patient autonomy, informed consent, confidentiality of genetic information, privacy, testing of minors, social discrimination and stigmatization.