Populations and Genetics: Legal and Socio-Ethical Perspectives

By Bartha Maria Knoppers | Go to book overview

Problematizing the Notion of “Community” in
Research Ethics

Fern Brunger, Ph.D.

Department of Bioethics Dalhousie University


Introduction

The concepts of “population” and “community” are used widely in research ethics discussions of population-based DNA sampling. Yet their meanings are multifaceted, and the concepts are used in multiple and sometimes contradictory ways. The politicized and polarized nature of the debates over community protection in population genetics is necessarily intensified when the multiple meanings of “population” and “community” are not carefully articulated and delineated.

The concern over language and meaning in population genetics has been comprehensively addressed in relation to the concept of “population”. There is general agreement that there is a problematic fit between social and biological characteristics of populations, such that research on human genetic variation can present genuine risks for socially identifiable populations.’”6 All members of a socially identifiable population may be placed at risk by the identification of genetic features linked with their common identity. These social risks have been documented in relation to ethnic communities. Prominent examples are the association of African-Americans with sickle-cell trait7 and Ashkenazi Jews with specific BRCA1 alleles8. Ethnic groups may be stereotyped or stigmatized by the use or misuse of information derived from a genetic study on some members of the community. They may also be stigmatized by the very act of identifying the group for genetic research. Insurance discrimination, or other restrictions on access to various social benefits may occur. The risks presented by research on genetic variation are not limited to disease associations and are not purely social or economic.

Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. © 2003 Koninklijke Brill NV. Printed in the Netherlands.

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