Scientific Knowledge About Human Genetic
Sandra Soo-Jin Lee and Barbara A. Koenig
Center for Biomedical Ethics Stanford University
In the past several decades, the field of human genomics has burgeoned into a multibillion-dollar scientific enterprise. Discoveries in this field, including the recently completed sequence of the human genome, have prompted promises of enhanced disease prevention and medical treatment. Critical to this research is the collection and storage of DNA samples from individuals. DNA sampling practices, specifically among racially and ethnically identified populations have received critical attention. Fear of exploitation of racialized and historically vulnerable populations has led to increasing consideration of the ethical, legal and social implications of biomedical research that links race with genetics. Over the past century, there has been growing consensus that race is a biologically meaningless category. However, of late, population geneticists have justified the use of race in human genetics research, which has led the lay press including the International Herald to report, “race has been rediscovered by science.”1 In this paper, I will investigate this debate and explore the implications of racial categorization of DNA samples on biomedical research and clinical medicine. I will discuss the meanings of race in human genetics research and address the assumptions and goals of racial categorization practices and their ultimate impact on medical knowledge and commercial and clinical applications. This paper emerges from a ongoing research program entitled, “The Ethics of Identifying Race in the New Genetics,” and is funded by the National Human Genome Research Institute (NHGRI).2 Anthropological fieldwork has been
Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. ©2003 Koninklijke Brill NV. Printed in the Netherlands.