Principle 1 - Informing the public
-
Plans for the introduction of genetic testing and screening should be brought to the notice of individuals, families and the public.
-
The public should be informed about genetic testing and screening, in particular their availability, purpose and implications - medical, legal, social and ethical - as well as the centres where they are carried out. Such information should start within the school system and be continued by the media.
Principle 3 - Counselling and support
-
Any genetic testing and screening procedure should be accompanied by appropriate counselling, both before and after the procedure. Such counselling must be non-directive. The information to be given should include the pertinent medical facts, the results of tests, as well as the consequences and choices. It should explain the purpose and the nature of the tests and point out possible risks. It must be adapted to the circumstances in which individuals and families receive genetic information.
Principle 11 - Unexpected findings
In conformity with national legislation, unexpected findings may be communicated to the person tested only if they are of direct clinical importance to the person or the family. Communication of unexpected findings to family members of the person tested should only be authorised by national law if the person tested refuses expressly to inform them even though their lives are in danger.
|
