Revised guidelines on the use of genetics and genetic testing in health care have been published by the World Medical Association.
In a document it has entitled the Declaration of Reykjavik, the WMA says that the increasing use of genetics and genetic testing will create great value. However, because genetic information is particularly sensitive, they also raise issues of confidentiality, privacy and the risk of psychological distress, stigmatization, and discrimination.
The guidelines say that genetic testing should be done for the benefit of the patient. The document highlights patient autonomy and preferences, and says these should be respected. Genetic testing or treatment must only be performed with informed consent.
Genetic test results may have implications for third parties, such as relatives, and the guidelines cover recommendations for handling those results that might have serious harm if not disclosed.
WMA President Dr. Miguel Jorge said: ‘At a time when consumer genetic testing is growing, it is very important that we update our guidelines for the protection of patients.’
The document also includes guidance for clinical use of data from genetic research, additional test findings and direct-to-consumer tests. It covers gene therapy and editing used to manipulate disease related genes. And the guidelines state quite clearly that the WMA is opposed to reproductive cloning of humans and gene editing of human germline cells, which have scientifically unresolved risks and should not be clinically applied.