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This paper analyzes the law, ethics and public policy concerning "genetic discrimination," defined as the denial of rights, privileges or opportunities on the basis of information obtained from genetically based diagnostic and prognostic tests. The Human Genome Initiative will enhance the ability to gather and organize information that may predict a person's future potential and disabilities. Enormous human benefits may ensue from understanding the etiology and pathophysiology of genetic disorders, including disease prevention through genetic counseling, and treatment of the disorders through genetic manipulation. This information will help clinicians understand and eventually treat many of the more than 4,000 diseases known to be caused by single-gene defects, as well as multifactorial diseases.

This paper also explores the legal and ethical constraints that ensure genomic information is used only to protect a person's health or safety, or enforce legitimate job, service or benefit criteria. It reviews the scope, prevalence and potential of genetic discrimination, and why such discrimination violates fundamental principles of human rights and undermines the public health goals that are the true promise of the Genome Initiative. The paper then examines whether the Americans with Disabilities Act and the corpus of anti-discrimination law are sufficiently relevant and comprehensive to safeguard against genetic discrimination. As part of this examination, the paper will discuss genetic discrimination in two key sectors: employment and insurance. Finally, the paper proposes future legislative and judicial safeguards against genetic discrimination.

Publication Citation

17 Am. J.L. & Med. 109-144 (1991)