GINA Examined Under The Microscope

Robin Foret
August 11, 2009 — 2,484 views  
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In an era of test tube babies and cloning, GINA is an attempt to keep pace with technology and address the vast ethical concerns surrounding our understanding of genes and chromosomes and the role they 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.  Amidst widespread ethical concerns that the power to analyze the human body at the genetic level would unearth the potential for unfairness in the insurance and in the employment contexts, the Genetic Information Nondiscrimination Act of 2008 ("GINA" or the "Act") was enacted.  GINA will become effective for employers on November 21, 2009; it prohibits secret genetic testing of employees and protects the privacy of any genetic information obtained.  


Historical Prospective


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.  


Requirements of GINA


Who is an employer - GINA applies to all employers with 15 or more employees and is modeled after Title VII of the Civil Rights Act of 1964 ("Title VII").  In addition, employment agencies, labor organizations and training programs (such as apprenticeship programs) are subject to the requirements of GINA.  


Genetic Information is Confidential -An employer may not request, require or purchase genetic information of an employee or the family member of an employee (defined as individuals within 4 degrees of relationship).  Genetic information is defined as an employee's genetic test, a family member's genetic test, a family history of disease, the information about a fetus, and a legally held embryo.  Genetic information is considered confidential medical information under the ADA and the Health Insurance Portability and Accountability Act of 1996 ("HIPAA") and generally may not be disclosed.  There are exceptions to these general prohibitions.


Information that may be obtained - an exception to GINA allows employers to obtain the following genetic information: (1) a family history needed to comply with FMLA certification requirements; (2) as part of a wellness program in which genetic information is made available only to the family member and the physician; (3) genetic monitoring of the biological effects of toxic substances with written notice to the employee, voluntary authorization from the employee, the disclosure of test results, and disclosure to employers is limited to aggregate terms to protect the identity of the employees tested; (4) an employer's inadvertent request for information (water cooler talk); and (5) information that is publically available through newspapers, books, etc.


Information that may be disclosed - an employer does not violate GINA by disclosing genetic information limited to the following: (1) an employee (or family member defined under the Act) upon written request; (2) in accordance with a court order, but with notice to the employee; (3) to comply with FMLA certification requirements; (4) to government officials investigating compliance with GINA; and (5) to federal or state public health agencies concerning contagious diseases that present a health hazard.


No Discrimination in Employment - generally, employers may not use genetic information for employment decisions such as hiring, firing, promotions, or to otherwise discriminate against an applicant or employee in terms and conditions of employment.  Genetic testing includes the analysis of human DNA, RNA, chromosomes, proteins or metabolites that detect genetic changes or abnormalities.  




GINA applies the remedies and damages consistent with those described in Title VII.  Accordingly, employees may be entitled to injunctive relief, reinstatement or front pay, back pay, lost benefits and compensatory damages up to the statutory caps, and costs (including attorney's fees). See 42 U.S.C. §1981a and §2000e-5(g). Enforcement is handled through the Equal Employment Opportunity Commission ("EEOC"), and therefore, complaints of genetic discrimination must be initiated by filing a charge of discrimination.  The Act specifically excludes disparate impact discrimination claims at the current time, but left the door open for recognition of these types of claims at a later date.  


Interaction with other Laws


GINA is designed to work in conjunction with a variety of other laws, including HIPAA, the ADA and the Occupation Safety & Health Administration Act ("OSHA").  GINA will alter these other statutory laws to some extent.  Most notable are the following: under HIPAA genetic information is considered medical information entitled to the same privacy protections; employers conducting medical examinations allowed under the ADA will no longer be able to inquire about family medical history; and, testing permitted under OSHA will need to meet GINA requirements with notice to employees tested and making test results available to employees.




In the 21st century we can expect to see rapid technological advancement, especially in the field of genetics.  GINA is an attempt to keep pace with new technology and address ethical concerns surrounding our understanding of genes and chromosomes, and prevent possible misuse of such powerful information.  It remains to be seen exactly how the courts will interpret GINA when confronted with specific situations.   



The information contained in this article is not designed to address specific situations, and does not include rules or regulations that apply to all states.  If you have questions concerning this topic, you should consult with legal counsel of your choice to obtain advice on various fact specific matters. 


Robin Foret

The Foret Law Firm

Robin Foret practices in the areas of employment law, commercial litigation and specialty insurance defense claims. She handles a variety of employment matters such as theft of trade secrets, breach of employment agreements, non-competition agreements, wage and hour issues under the Fair Labor Standards Act (FLSA), discrimination and harassment issues under Title VII of the Civil Rights Act of 1964 (Title VII) and the Texas Commission on Human Rights Act (TCHRA), the Americans with Disabilities Act (ADA), Family Medical Leave Act (FMLA) issues, and the Sarbanes-Oxley Act (SOX). Robin has handled a wide variety of employment law matters for employers, as well as for executive-level employees, before agencies, and state and federal courts.