Claudia Wiesemann

Modern repro-genetics is going to change the way we conceive our children, and will have a substantial influence on the family. Two concepts of the family have been present in the ethical debate: the traditional model and the care model of the family. The first one has been rightly criticized because it privileges form over function. I will show that the second model is also insufficient and does not answer to the moral challenge of human natality, particularly from a child's point of view. Instead, I will suggest a third, kinship model of the family as moral agent. In post-traditional and post-patriarchal societies, the family must be reconsidered as actor in the ethical debates. This poses a challenge for ethical theory. The family's interests are best protected by a concept of relational privacy.

ZusammenfassungDas ethische Prinzip des Respekts vor der Autonomie des Patienten/probanden hat in der modernen Medizin mittlerweile weltweit Bedeutung erlangt. Die Betonung der Autonomie des Patienten und Probanden in allen in der letzten Zeit verabschiedeten internationalen Deklarationen gibt dieser Tendenz unmissverständlich Ausdruck. Doch wenngleich diese Entwicklung unstrittig positiv ist, wirft sie dennoch eine Reihe von Fragen auf, die mit der Kodifizierung, Interpretation, Reichweite und Anwendung dieses universalen Prinzips verbunden sind. Die Antworten auf diese Fragen entscheiden darüber, ob Autonomie als hilfreiches, emanzipatorisches oder als überforderndes, gar hegemoniales Prinzip begriffen wird. Diese normativen Probleme werden anhand von Beispielen aus der globalen Medizinethik verdeutlicht. Was in modernen Gesellschaften als Autonomie bezeichnet und für die Praxis fruchtbar gemacht wird, ist als ein soziales Konstrukt zu verstehen, nicht im Sinne einer Schimäre, sondern im Sinne einer soziokulturellen Leistung, die auf komplexen, historisch gewachsenen und kulturell geprägten Interaktionen von Gesellschaften, Institutionen und Individuen beruht.

The paper discusses the current medical practice of "gender verification" in sports from an ethical point of view. It takes the recent public discussion about 800-meter runner Caster Semenya as a starting point. At the World Championships in Athletics 2009 in Berlin, Germany, Semenya was challenged by competitors as being a so called "sex impostor". A medical examination to verify her sex ensued. The author analyses whether athletes like Semenya could claim a right not to know that is generally acknowledged in human genetics and enforced by international and national genetic privacy laws. The relevance of this right for genetic diagnosis in sports is discussed. To this end, the interests of the athlete concerned and of third parties are balanced according to the expected benefits and harms. Harm is documented in a number of cases and includes unjustified disqualification, severe sex and gender identity crisis, demeaning reactions, social isolation, depression and suicide. Benefits are dubious as most cases of intersex are considered irrelevant for sports competition. It has to be concluded that the benefits to be gained from "gender verification" in sports via genetic testing do not outweigh the grave individual disadvantages. The current practice of athletic associations to largely ignore the right of competitors not to know does not comply with prevailing ethical provisions on the protection of sensitive personal data. Therefore, genetic "gender verification" in sports should be abolished.