Genetics – Ethical Implications of Research, Diagnostics and Counseling

Abstract

Through the advent of molecular genetics, our understanding of human life, the predisposition to disease and the issue of nature-nurture is ever increasing. Research involving medical and (more particularly) genetic data carries a certain risk of the infringement of personal rights. However, this risk can be minimized by appropriate legislation, the involvement of ethics committees, and the professional integrity of individual researchers. A society that wishes to benefit from progress in medical research must also contribute to this research. It is worrying, if not blatantly unethical, for developed societies to prefer to merely import knowledge obtained from basic or translational research conducted abroad, particularly when this involves research conducted in developing nations. The UK Biobank and disease-oriented genetic research programs in Denmark have demonstrated that it is possible to achieve a balance between the protection of personal rights and the needs of research. Two widespread fears mentioned in this chapter remain to be prevalent in society. One is that our ever increasing knowledge of genetics may ultimately reveal an underlying biological determinism (cf. Propping 2002). This would relegate humans to the status of mere machines that are under the control of their genes. The other fear is that society will witness a 'geneticisation' of all aspects of human life and a revival of eugenics as a consequence of large scale genetic screening,. It is, however, unlikely that the imprecise and unrealistic goals of early eugenics will experience a renaissance. It is perhaps possible, however, that the pursuit of healthy offspring will lead to an increased use of prenatal diagnosis and the elective abortion of affected embryos. Geneticists are well aware that public acceptance of their work is dependent upon a strict adherence to those ethical standards that are in place to avoid ethically questionable results or strategies. Society and legislators must engage in ongoing and transparent discussion of all developments in this field of research in order to ensure the integrity of human rights and the maintenance of autonomy, non-malevolence, dignity, and confidentiality within the context of human genetic research. (PsycINFO Database Record (c) 2012 APA, all rights reserved). (chapter)