Privacy and Antidiscrimination Issues: Genetics Legislation in the United States

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Abstract
There are strong incentives for individuals to undergo genetic tests. Genetic information can improve clinical analysis, facilitate medical research, improve the public health, and enhance individual autonomy. However, the rise of genetic information within the health information infrastructure also presents risks to individual privacy and threats in the form of discrimination. While the federal government contemplates genetic privacy legislation, at least 34 states have passed genetic privacy and anti-discrimination legislation. This article examines the scope, intent, and effects of such state legislation. While some state genetics laws are appropriately tailored to the legislators’ intentions, some laws do not properly consider the science of genetic testing or may be over-broad or under-inclusive toward regulating in the interests of preserving individual privacy or prohibiting genetic discrimination by health insurers, employers, and others. Future guidance concerning state genetics legislation may flow from the NIH-funded project, entitled ‘Genetics Legislation: Syntax, Science, and Policy’, that will assist state and federal legislators to legislate effectively concerning genetic privacy.