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Current view on Bioethics and Genetics: Genetic Counselling

Currently, there are over 4000 known genetic disorders and diagnostic tests are available for over 1400 of them. The rapid and constant advances in human genetics, as well as the possibility of prenatal and postnatal genetic analysis for predisposition to diseases, and genetic modification of humans, opens numerous bioethical questions because medical genetics is developing faster than law regulations and public opinion. The specificity of genetic disorders comes from the fact that they, for now, cannot be cured but with the proper medical and psychological support the quality of life can be improved. Genetic predisposition to diseases represents a life-long risk factor which often affects familiy relations and quality of life, including development of depression, tension and anxiety. The availability of more information and more possibilites, including the selection of embryos with favourable „ gene maps“ and with decreased risk of hereditary diseases, should facilitate important decisions, from personal to social level. This also leads to the problem of basic human rights of the „ less perfect“ concepts in relation to the collective „ evolutionary imperative“ for constant improvement of human species. Around us there is an unavoidable pressure on both doctors and parents to make sure that children are born healthy. The development of prenatal tests has promoted the idea that it is a part of responsible parenthood to avoid the birth of a disabled child. It is obvious that through the sofisticated alleviation of human „ imperfection“ – that is, through selection of values of human life according to hereditary features – we are returning to the old eugenics through a new approach, through individual eugenics. The increasing number of hereditary disorders, as well as the increasing interest of medical profession on the role of new genetics in health and disease, emphasizes the importance of genetic counselling, a lifelong process of providing professional and scientific genetic informations, with significant legal and social implications. Due to its distinctive social and psychological importance for an individual or a family, and with it for the society, it is appropriate to say that genetic counselling is also bioethical. This is why bioethics, in its interdisciplinarity, represents a „ bridge“ between ethical principles and genetic practice in extremely technologized clinical circumstances. At the same time, the initiation of premature ethical discussions raises the question on the ethics of the discussions themselves due to the fact that they are not based on the competent and detailed knowledge of the problems in medical genetics. This is why the critical area for the 21st century is to increase health professional and public education about genetics/genomics. Therefore genetic counseling might be considered more as patient-education than as actual advice and should include ethical information in addition to medical and social facts. Although in the managment of genetic disorders the prevention is dominant (meaning the prevention of giving birth to a „ different“ child), the main goal of genetic counselling is to help individuals and families understand or cope with genetic diseases as well as to provide lifelong medical and psychological support, and not only to decrease the incidence of genetic disease.

bioethics; genetic counselling; medical genetics; genetic information; new eugenics

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