On May 21, 2008, President Bush signed into law the Genetic Information Nondiscrimination Act of 2008 ("GINA"). GINA amends three employment-related laws including: (1) Title VII of the Civil Rights Act (Title VII); (2) the Employee Retirement Insurance Security Act (ERISA); and (3) the Fair Labor Standards Act (FLSA). While most of the provisions will become effective in 2009, it is important for employers to be familiar with GINA’s basic concepts and provisions to better prepare for the Act’s implementation.


At the time of GINA’s passage, thirty-five states had laws relating to discrimination in employment based on genetic information. Pennsylvania does not. As the state laws vary, one of Congress’s goals in enacting GINA is to provide for an umbrella federal provision applicable to all persons in the U.S. GINA does not preempt state laws that provide more protection for genetic information. Notably, this law is responsive to many efforts in the medical community to personalize medical care, such that diagnosis and treatment plans would be tailor made for each patient based on his or her genetic make up.

What Is "Genetic Information" Under GINA?

Under GINA, “genetic information” is broadly defined to include information about: (1) an individual’s genetic tests, (2) the genetic tests of the individual’s family members, and (3) the manifestation of a disease or disorder in a family member. “Family member” is defined to include an individual’s spouse or dependent child by birth or adoption, and certain other relatives of such individual, individual’s spouse or dependent child. “Genetic information” does not include information about the sex or age of any individual.

How Does GINA Amend Title VII?

The GINA amendments to Title VII are effective November 21, 2009. Specifically, GINA:

1.            Makes it an unfair employment practice for employers, employment agencies and others to discriminate against individuals based on “genetic information” in hiring, firing and other terms and conditions of employment; and

2.            Makes it unlawful to limit, segregate, or classify employees in any way that would deprive or tend to deprive the employee of employment opportunities or otherwise adversely affect the status of the employee because of genetic information.

            Notably, GINA provides that the Equal Employment Opportunity Commission has one year to issue implementing regulations and that an individual’s rights and remedies under GINA are analogous to those provided under Title VII; except no disparate impact claims are available under GINA.

Moreover, GINA generally prohibits employers from requesting, requiring or purchasing genetic information except under specific circumstances, such as for genetic services offered by the employer and for purposes of complying with the Family and Medical Leave Act (FMLA). Like the Americans with Disabilities Act, GINA provides that to the extent an employer has genetic information, the employer must keep the information confidential. GINA is dissimilar from the ADA, however, because GINA prohibits discrimination based on the possibility of contracting a disease per family history or testing, whereas the ADA prohibits discrimination based on current/past/perceived disability.

How Does GINA Amend ERISA?

GINA’s amendments to ERISA are effective May 21, 2009. Under GINA, an ERISA-covered group health plan cannot:

  • Request, require or purchase genetic information for underwriting purposes or in advance of an individual’s enrollment;
  • Adjust premiums or contribution amounts of the group based on genetic information; or
  • Request or require an individual or family member to undergo a genetic test except in limited situations specifically allowed buy GINA.

Under GINA’s amendments to ERISA, a group health plan’s noncompliance may present significant liability for both the plan and its sponsor. Participants or beneficiaries will be able to sue noncompliant group health plans for damages and equitable relief. If the participant or beneficiary can show an alleged violation would result in irreparable harm to the individual’s health, the participant or beneficiary may not have to exhaust the typical administrative remedies before suing in court.

            How Does GINA Amend HIPAA?

            HIPAA, the Health Insurance Portability and Accountability Act of 1996, covers genetic information with additional safeguards.  HIPAA protects the privacy of an individual’s medical information. GINA amends HIPAA to specifically state that genetic information should be considered medical information and receive the same privacy protections.  In addition, HIPAA now specifies that genetic information without a current diagnosis of illness is not a pre-existing condition. The HIPAA amendments will be published in the Federal Register no later than 60 days after GINA’s enactment and will be effective upon publication.

How Does GINA Amend The FLSA?

In addition to creating an entirely new protected trait, GINA also contained amendments to the child labor provisions of the FLSA. The amendments to the FLSA are effective as of May 21, 2008. Specifically, the amendments (1) increase the penalty for child labor violations by $1,000 per violation and (2) raise potential employer liability to $50,000 where a violation causes the death or serious injury of a minor.  This amount can be doubled for repeat or willful violations.

How To Prepare For GINA?

Although not currently effective, it is recommended that employers take a proactive position on preparing their enterprises for GINA. Some things to consider include:

·        Revising EEO and Anti-Harassment Policies to include "genetic information."

·        Monitoring your group healthcare plan to assure that it will be in compliance, afterall GINA provides for plan sponsor liability.

·        Creating a policy to flag genetic information provided for FMLA leave v. genetic information provided for other forms of leave. As of now, it appears that only FMLA leave situations fit within the leave exception to GINA.

·        Create a policy wherein genetic information is stored in the same manner as all medical documents submitted for ADA purposes (i.e. confidentially).

·        Stay Tuned to What the Agencies Issue During The Next Year!