title: Ethical aspects of genome diversity research: genome research into cultural diversity or cultural diversity in genome research?
abstract: The goal of the Human Genome Diversity Project (HGDP) was to reconstruct the history of human evolution and the historical and geographical distribution of populations with the help of scientific research. Through this kind of research, the entire spectrum of genetic diversity to be found in the human species was to be explored with the hope of generating a better understanding of the history of humankind. An important part of this genome diversity research consists in taking blood and tissue samples from indigenous populations. For various reasons, it has not been possible to execute this project in the planned scope and form to date. Nevertheless, genomic diversity research addresses complex issues which prove to be highly relevant from the perspective of research ethics, transcultural medical ethics, and cultural philosophy. In the article at hand, we discuss these ethical issues as illustrated by the HGDP. This investigation focuses on the confrontation of culturally diverse images of humans and their cosmologies within the framework of genome diversity research and the ethical questions it raises. We argue that in addition to complex questions pertaining to research ethics such as informed consent and autonomy of probands, genome diversity research also has a cultural-philosophical, meta-ethical, and phenomenological dimension which must be taken into account in ethical discourses. Acknowledging this fact, we attempt to show the limits of current guidelines used in international genome diversity studies, following this up by a formulation of theses designed to facilitate an appropriate inquiry and ethical evaluation of intercultural dimensions of genome research.
authors.affiliation: Institute for History, Philosophy and Ethics of Medicine, Johannes Gutenberg University, Mainz, Germany. ilkilic@uni-mainz.de
authors.forename: Ilhan
authors.initials: I
authors.lastname: Ilkilic
authors.forename: Norbert W
authors.initials: NW
authors.lastname: Paul
mesh_terms: D018864:Cultural Diversity; D030561:Databases, Nucleic Acid / Q000941:ethics* / Q000458:organization & administration; D004992:Ethics, Medical; D032984:Ethics, Research; D005006:Ethnicity / Q000235:genetics; D005820:Genetic Testing / Q000941:ethics* / Q000458:organization & administration; D016045:Human Genome Project / Q000941:ethics* / Q000458:organization & administration; D006801:Humans; D009014:Morals; D026684:Personal Autonomy; D012945:Social Values