„Homo geneticus” jako „zoon genetikon”. Prawo do niewiedzy a obowiązek wiedzy w dobie ryzyka genetycznego

Abstract

Development of new biotechnologies, including genetic tests, create new diagnostic and therapeutic opportunities. Nevertheless, as genes are shared with others many emphasize public dimension of genetic information, which transformations medical ethics and patient’s right not to know. It results in emergence of ethos of duty, which constitutes a basis for the concept of “biological citizenship”. Together they impose on individuals duties to undergo the test, to know the risk, to share that information with others and to undertake “appropriate” preventive steps. The study presents arguments for and against patient’s right not to know about one’s genetic risk. In contrast to many studies which focus of professional perspective it compares attitudes of geneticists and family members of patients affected by Huntington disease, members of Polish Society of Huntington Disease. Additionally, the paper explores new opportunities genetics creates for biopower. Key words: bioethics, biological citizenship, biopower, Huntington disease, ethos of duty, geneticization, duty to know, right not to know, sociology of genetics, Polish Society of Huntington Disease.