Perceived by the Potential Patients
Jackie Leach Scully, Christine Rippberger, Christoph RehmannSutter
Arbeitsstelle fur Ethik in den Biowissenschaften, Institut für Ceschichte und Epistemologie der Medizin, Schönbeinstrasse, Basel, Switzerland
The ethical aspects of the new genetic technologies, including sampling, have been exhaustively examined by professional ethicists, and numerous public policy statements have been produced around the world. Since the earliest ethical considerations of hypothetical genetic manipulations were made in the 1960s, they have predominantly reflected the standpoints of the professionals who make them: academic philosophers or theologians, or medical personnel with an interest in ethics. Although some sociological attention has been directed at patients and affected groups, this has focused on surveying their attitudes towards various ethical issues, or on their understanding of genetics.1 Little attention has so far been paid to identifying the sources of the ambivalence expressed by some sections of the lay public, or examining the factors affecting the moral reasoning of non-professionals when they reflect on genetic issues. This neglect is likely to be a result of the prevailing model of the lay approaches to science, in which the public are regarded as being deficient in scientific information and therefore their moral perception or reasoning regarded as of no significance to medical ethics. Inadequate factual understanding makes a moral evaluation unreliable and the views and arguments of lay people irrelevant for ethical analysis, even if their psychological or sociological importance is undisputed.
According to this “deficit model” of lay evaluation, the prime need is to improve the public understanding of science so that lay people can better comprehend what the professionals are saying. Recently this model has been
Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. © 2003 Koninklijke Brill NV. Printed in the Netherlands.