The Right to Know and not to Know: Predictive Genetic Diagnosis and Non-diagnosis.

Abstract

The expansion of genetic diagnostic potential in the direction of future contingencies (risks) creates temptations and compulsions for timely knowledge and responsible-sometimes radical-prevention. In the area of mamma carcinoma, the 'Angelina Jolie effect' has not only been a media topic but has had real consequences. The undisputed right to knowledge is increasingly taking on the character of a general recommendation or even norm for society as a whole, regardless of the possibly toxic consequences of discovering a predisposition. In an "enlightened knowledge society" in which health and illness increasingly "appear as products of our own actions" (Giovanni Maio), not wanting to know is difficult; thus, it is all the more significant that this concept has found widespread recognition in current law. Its legal practical implementation, however, presents several questions that have not yet been fully clarified, for example in connection with incidental medical findings or family members affected as third parties. It is also unclear how, in the age of next-generation sequencing and the standardizing digitalization of medicine and society, it will be possible to counteract the cultural bias in favour of knowledge, even outside the law.