Smer Comments 2019:1 Direct-to-consumer genetic testing of children

The Swedish National Council on Medical Ethics has commented on an opinion from the Norwegian bioethics council regarding genetic testing of children.

According to the Swedish council, genetic testing of children should only be carried out within the health care setting. All other genetic tests should be postponed until the child is mature enough to decide for him/herself. This goes for tests both with medical and non medical purposes.

The Swedish council would like to stress the importance of the child’s right to self determination, but also the risks linked to lack of information and genetic counselling. It can be very hard for the individual to interpret the results of a genetic test, and to assess what the consequences for him or her might be. Direct-to-consumer genetic tests has also been questioned when it comes to the quality of the tests and their results, especially when it comes to complex genetic diseases.

The comment is only available in Swedish, you can find it here (pdf 764 KB).