Legislation and ethics

Genome testing generates extensive information about individuals’ health and characteristics. This data is valuable to research and public health services, and it is possible to detect links between heritage and medical conditions. In certain cases, genome data makes it possible to offer patients better and more tailored treatment.

On the other hand, genome data is highly sensitive, and knowledge in the area is still fairly limited. Genome research therefore clearly also gives rise to questions about legal, ethical and social implications for the individual, families and for society. New testing methods therefore make it necessary to adapt the legislation governing the area. It is, for example, necessary to regulate the right to self-determination of patients/participants, information and the rights of participants in research projects, data storage, how genome data can be used in research and in public health services, how the public health services can integrate new developments in the field, etc.