Een tumor is ook collectief bezit. Het afstaan van lichaamsmateriaal ten behoeve van DNA-banken

Abstract

Abstract: A tumor is collective property. Donating body materials for DNA-banking. Genomics has given rise to a new medical practice, the sampling of body materials to be stored and researched in combined data- and DNA-banks. This article shows how the ensuing ethical and legal discussions by and large follow the patterns and argumentation strategies that were laid down during the sixties and seventies. At the core of this 'protection paradigm' is the conviction that the individual (patient or donor) deserves protection from the power of the medical-scientific-industrial complex. But a new technology like genomics should result in an open re-evaluation of such entrenched ways of understanding and evaluating. For this reason it is critical to look at the no harm principle and the principle of autonomy, differentiated here into the principles of informed consent, self-ownership and privacy. The author argues, first, that using body material involves no risk of bodily harm. Second, since genomics has progressed from studying monogenetic to multifactor diseases, many foretold socio-economic and psychological risks seem to have evaporated. Therefore, the no harm principle and the privacy principle hardly apply to the use of body materials. Third, the same holds for the principle of ownership in the case of bodily materials the existing justifications for applying this principle seem counter-intuitive. Finally, the principle of informed consent introduces a concept of reason that not only entails rights for the patient/donor, but also the obligation to give reasons for not helping others by donating a little body material. The proposal is that donors should not primarily be seen as victims, but as citizens who contribute to the common good.