The Genetic Information Nondiscrimination Act of 2008 ("GINA" or the "Act") is an attempt to keep pace with technology and address the numerous ethical concerns surrounding our understanding of the role genes and chromosomes play in making each one of us unique. As a result of the Human Genome Project, scientists were able to map the genes located on the 46 human chromosomes that determine our physical characteristics, unexpressed genetic traits that we pass along to our offspring, and even our susceptibility to certain diseases. Because of widespread ethical concerns related to the power to analyze the human body at the genetic level will result in discrimination in the insurance context, and in the workplace, GINA was enacted. The employment provisions of GINA will become effective on November 21, 2009. The Act will prohibit secret genetic testing of employees and protect the privacy of any genetic information obtained.
Each of us shares the almost identical genetic information contained on 46 chromosomes. However, the subtle genetic differences that exist account for physical differences such as height and eye color, unexpressed characteristics that are passed from one generation to another and sometimes expressed as physical characteristics or disease, and in some cases, create a risk of developing a disease. Initiated in 1990 and completed in early 2003, the Human Genome Project was an international scientific effort to map the genes on the 46 human chromosomes. Genetic mapping enabled scientists to identify specific genes responsible for a variety of genetic characteristics, including those that cause diseases, and those genes that create a higher risk that an individual with a certain genetic make-up will develop a particular disease, such as cancer or high blood pressure sometime during their life.
GINA was a reaction to ethical concerns about the possible misuse of genetic information in the insurance industry, as well as the employment environment. The health insurance industry provisions of GINA became effective in May 21, 2009, and these provisions prevent insurance companies and group health plans from using genetic information to deny insurance coverage or to classify an individual as having a preexisting condition. The employment provisions of GINA will become effective on November 21, 2009.
Even before the completion of the Human Genome Project, employers had already attempted to use genetic information to weed out employees who the employer believed were at risk for developing certain diseases, or to exclude employees from certain ethnic groups that tended to have a higher frequency of certain disorders such as sickle cell anemia. For example, in Norman-Bloodsaw v. Lawrence Berkley Laboratory, 135 F.3d 1260 (N.D. Cal. 1998), the court determined that the employer had unlawfully secretly tested employees for syphilis and sickle cell anemia in violation of the Americans with Disabilities Act. Also, in EEOC v. Burlington Northern Santa Fe Railway, No. 02-C-0456 (E.D. Wis. 2002), the EEOC obtained a $2.2 million settlement for employees who had been secretly tested for genetic abnormalities believed to be linked to carpal tunnel syndrome as well as other disorders.
The Americans with Disabilities Act ("ADA") prohibits discrimination against individuals with a disability, as well as those who are "regarded as" disabled (perceived to be disabled when no such disability exists), and generally prohibits medical exams that tend to screen out the disabled. However, the ADA falls short of insuring the privacy of genetic information, or providing protection to those individuals who have genetic abnormalities that indicate a susceptibility to disease when the individual has not manifested any actual disease. For many diseases, environmental and other factors may influence whether a disease will ever manifest itself. GINA specifically prohibits secret genetic testing of employees as a condition of employment, and limits the circumstances under which employers may conduct genetic testing of employees and/or disclose genetic test results.
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