Genetic testing, genetic screening and privacy

Abstract

For moral philosophers and lawyers one of the most embarrassing characteristics of genetics is that it touches intergenerational problems. It follows from the intergenerational nature of genetics that it is difficult to draw the line between medical and non-medical information produced by genetic testing or screening. Since the concept of medical confidentiality, and parallel to this privacy protection, has grown out of the elementary human wish to maintain control over the individual’s own personal information, including medical data, it became a challenging task for philosophers and lawyers to define how far genetic data can be classified as personal information and how far it can be classified as information which affects spouses, children, the fetus or the planned child. David Heyd (1992) elaborates this scepticism when he claims that prior to any moral and legal discourse it is necessary to decide whether questions provoked by genetics are parts of ethics, or whether they belong to a non-moral sphere of deliberation and evaluation. It is not my purpose to challenge this position but it may be evident from my enterprise that genetic screening, testing and moreover fundamental problems of genetics are moral problems and those who choose to undergo these examinations are subjects of the general legal protection of persons. In contrast to ordinary medical diagnosis both genetic screening and genetic testing touch upon the questions of future generations and as a consequence they go beyond the sphere of moral and personal rights of one single individual concerned (e.g. counsellee).