Ethical aspects of genome diversity research: genome research into cultural diversity or cultural diversity in genome research?
- 1 July 2008
- journal article
- review article
- Published by Springer Science and Business Media LLC in Medicine, Health Care and Philosophy
- Vol. 12 (1), 25-34
- https://doi.org/10.1007/s11019-008-9147-x
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.Keywords
This publication has 18 references indexed in Scilit:
- Schöne neue Welt der Prävention? Zu Voraussetzungen und Reichweite von Public Health GeneticsDas Gesundheitswesen, 2007
- The Human Genome Diversity Project: past, present and futureNature Reviews Genetics, 2005
- Genetics, Identity, and the Anthropology of EssentialismAnthropological Quarterly, 2002
- Indi-GENE-ous ConflictsEnvironmental Health Perspectives, 2001
- The Role of Community Review in Evaluating the Risks of Human Genetic Variation ResearchAmerican Journal of Human Genetics, 1999
- A Model Agreement for Genetic Research in Socially Identifiable PopulationsAmerican Journal of Human Genetics, 1998
- Rethinking Risks to Human Subjects in Genetic ResearchAmerican Journal of Human Genetics, 1998
- Genotyping in Clinical Trials: Towards a Principle of Informed RequestJournal of Medicine and Philosophy, 1998
- ETHICAL ISSUESEthical Issues in International Collaborative Research onthe Human Genome: The HGP and the HGDPGenomics, 1996
- Call for a worldwide survey of human genetic diversity: A vanishing opportunity for the Human Genome ProjectGenomics, 1991