At What Age Should Information on Genetic Testing be Accessible in Order to Raise Awareness and Prevent Genetic Disease among the General Population?

Abstract

Hereditary genetic diseases are illness that may be early identified, and there is agreement of the World Health Organization on the tests’ importance and its effectiveness. However, the screening test’ performance, as it is currently carried out, is affected by lack of information, which its damages range between lack of general knowledge on screening test’ performance to a situation in which the screening test are performed in the absence of informed consent. Therefore, there is a need to promote knowledge about the actual exams performance and their significance among general population. The question is what is the right age and manner to make this knowledge available in order to obtain a reasonable level of knowledge sufficient for informed consent. As of today there is not much literature dealing with this question and there is no consensus concerning the way of making the information available. Therefore, there is a need in additional research and extensive public debate concerning the promotion of knowledge about screening test, even only to provide informed consent in situations where the exam performance is mandatory and unavoidable.