Who has the right to know the genetic constitution of a particular person?
Having conquered computer science, linguistics and aesthetics, the 'informational paradigm' has finally reached bioscience. In terms of information theory a human being's personal identity is defined by his/her unique combination of genetic information ('genetic fingerprint'). Any ethical analysis of the accessibility of individual genetic data must therefore be considered both from a medical ethics and from an information ethics point of view. As far as medical ethics is concerned it is obvious that certain medical activities relating to the physical and psychological integrity of human beings require informed consent. Since all activity involved in revealing a person's genetic constitution fulfils the requirements of informed consent, it goes without saying that only the person concerned has the right to determine who should have access to his/her genetic information. From an information ethics point of view, however, there is by definition no such thing as the natural right to private ownership of any kind of information. Information is in principle rather defined as a publicly shared good. We could therefore conclude from this that in principle everyone has the right to know everyone else's genetic constitution. The paper discusses some of the resulting problems by analysing different sets of arguments and confronting them with higher-order principles of modern ethics.
Zimmerli
W C
WC
Lehrstuhl für Philosophie II, Otto-Friedrich-Universität Bamberg, Federal Republic of Germany.
D003219:Confidentiality; D004992:Ethics, Medical; D015894:Genome, Human; D006801:Humans