Academic journal article The Journal of Gender, Race and Justice

Are Your Genes Protected?: Federal Legislation and Genetic Discrimination

Academic journal article The Journal of Gender, Race and Justice

Are Your Genes Protected?: Federal Legislation and Genetic Discrimination

Article excerpt

I. INTRODUCTION

Imagine that you are a twenty-five-year-old male or female, educated, newly married, and hoping to start a family soon. The only problem with this happy scenario is that one of your parents has Huntington's Disease, and you know that you have a fifty percent chance of inheriting this terminal, neurological disorder.1 You currently exhibit no signs of the disease but have watched it strike your otherwise healthy parent at the young age of forty. The only way to detect me disease is through genetic testing, but you fear the results of me test may hinder your chances of qualifying for good insurance or successful employment. If you do not get tested, however, you will have no way of knowing whether you are passing the deadly gene onto your children.

Many people at risk of inheriting presymptomatic genetic disorders face this moral, ethical, and legal dilemma every day.2 Currently, the protections afforded to people in these situations in regard to employment and insurance vary from state to state, as there is no uniform federal legislation to protect people with genetic disorders from discrimination.3 There may be a solution in the near future: Congress currently has the opportunity to pass the Genetic Information and Nondiscrimination Act of 2005.4 This legislation would provide comprehensive and uniform protection against discrimination in insurance and employment for those suffering from genetic disorders.5

This Note examines current state and federal laws that attempt to protect people with genetic disorders and the inadequacies of those laws. Part II provides background information on current state and federal antidiscrimination laws, including different state laws; the Americans with Disabilities Act (ADA);6 the Health Insurance Portability and Accountability Act (HIPAA);7 and an Executive Order.8 While the current laws are a good start, none of them explicitly provide protection to those suffering from genetic disorders. Additionally, there is little case law challenging the validity of the existing laws and how they relate to those with genetic disorders. Part II of this Note also analyzes various presymptomatic genetic disorders, including Huntington's Disease and the discrimination people with the various diseases face.

Part III of this Note examines the Genetic Information and Nondiscrimination Act of 2005 and the protections it would afford those with genetic disorders in the insurance and employment industries. This Part also considers opposing arguments to me passage of the Act as well as important public policy concerns. Part III concludes that federal legislation is necessary to fill in me holes that other antidiscrimination laws leave open. Current state laws, the ADA,9 and HIPAA10 do not provide comprehensive protection against discrimination for those suffering from genetic disorders. This Note specifically argues that due to the lack of comprehensive and uniform protection against genetic discrimination, Congress should pass the Genetic Information and Nondiscrimination Act of 2005 to ensure protection in insurance and employment for those suffering from genetic disorders and for their families.

II. BACKGROUND

Currently, a handful of state and federal laws attempt to protect those suffering from genetic disorders from discrimination in insurance coverage and employment.11 This Part first examines current state laws relating to genetic disorders and discrimination. It next discusses current federal legislation, including the ADA,12 HIPAA,13 and an Executive Order,14 and their inadequacy in addressing genetic disorders. Finally, this Part concludes with an overview of various presymptomatic genetic disorders and me discrimination people with those disorders may face.

A. Current State Genetic Antidiscrimination Laws

Nearly every state has laws prohibiting genetic discrimination,15 but many of those laws are not comprehensive.16 State laws differ in the amount and type of coverage they provide, me protections they afford, and me enforcement mechanisms in place for those claiming discrimination. …

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