Populations and Genetics: Legal and Socio-Ethical Perspectives

By Bartha Maria Knoppers | Go to book overview

“Genetic Discrimination” in an International Context

Dorothy C. Wertz

Research Professor of Psychiatry, University of Massachusetts Medical School


1. Need for Definitions

Much discussion and legislative concern has focused on “genetic discrimination.” Some people fear that they will lose their health insurance if the insurance company obtains the results of a genetic test1 or finds out only that they have participated in a genetic research project. Yet there is no uniform definition of “genetic discrimination.” The word discrimination is usually associated with sex, race, or a history of oppression. It assumes a “class” of people who are victims of irrational and harmful actions on the part of institutions or majorities in power. The term also implies an organized plan to exclude the victimized class from good things in life and a fundamental denial of the rights and worth of some groups of human beings. Yet there is as yet no evidence of an organized plan on the part of insurers, employers, schools, or other institutions to deny goods to people with or at risk for genetic conditions or even to define a “class” of such people. Hence the term “discrimination,” which is fraught with emotion and negative history, may be a misnomer for refusals of insurance or employment on the basis of genotype.

“Genetic” is another term in need of definition. Most morbidity and mortality is at least partially based on genetics (including accidents, if behavioral studies on risk-taking are ever validated). Companies that excluded all conditions based on a combination of several genes or genes and environment would soon be out of business. Therefore, they hone in on conditions that are based on a single gene, such as cystic fibrosis or Huntington disease. However, members of the public who have been refused insurance or employment may have broader definitions of “inherited conditions” than those usually used by companies. Some laypeople may attribute many of the bad things that occur in their lives, including refusals of

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

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