Genetic Information Nondiscrimination Act Signed into Law on May 21, 2008

By Sally A. Piefer

The federal Genetic Information Nondiscrimination Act prohibits employers from discriminating against applicants and employees based on genetic tests or genetic information. GINA also prohibits health insurers from restricting enrollment and premium adjustments for health insurance on the basis of genetic information or genetic services.

GINA defines "genetic information" as: (1) an individual’s own genetic tests; (2) the genetic tests of family members; and (3) the manifestation of a disease or disorder in family members. Although GINA prohibits the collection of genetic information and its use in the workplace, there are a number of exceptions:

1. GINA does not prohibit acquisition of genetic information of an individual or family member which is inadvertently disclosed or received by the employer (e.g., during "water cooler" conversations);

2. GINA does not prohibit acquisition of genetic information where health or genetic services are offered by an employer (i.e., "wellness" programs),

3. GINA does not prohibit acquisition of genetic information or family medical history which is "commercially and publicly available" (e.g., obituaries of family members in newspapers, magazines, periodicals and books).

4. GINA does not prohibit acquisition of genetic information which an employer receives pursuant to an individual's prior, knowing, voluntary and written authorization; and

5. GINA does not prohibit acquisition of genetic information where it is received in compliance for medical certifications under the federal Family and Medical Leave Act (FMLA) or similar state laws.

There are two (2) specific sections of GINA:

Title I , effective May 21, 2009, applies to all group health plans, individual plans, and Medicare supplemental plans. Title I:

1. prohibits health plans and insurers from requesting or requiring genetic testing; and

2. prohibits the use of genetic information in restricting enrollment or for purposes of adjusting premiums.

Furthermore, the Health Insurance Portability and Accountability Act ("HIPAA") privacy rule limits an employer's use and disclosure of employees' protected health information ("PHI"). PHI is defined as all individually identifiable health information held or transmitted by group health plans or their business associates. Beginning on May 21, 2009, genetic information is considered to be PHI subject to the HIPAA privacy rule under the Genetic Information Nondiscrimination Act of 2008, Pub. L. No. 110-233, § 105 (2008) ("GINA"). Employers that violate the HIPAA privacy rule can be fined $100 for each violation (and up to $25,000 for all identical violations in a calendar year).

GINA requires the Secretary of the U.S. Department of Health and Human Services (HHS) to issue final regulations by February 21, 2009.

Title II, effective November 21, 2009, applies to all employers:

1. prohibits employers from discriminating on the basis of genetic information with respect to hiring, termination, compensation, promotions and assignments;

2. prohibits employers from requiring genetic testing and from purchasing or collecting genetic information, except in several limited exceptions, where the information is: (a) required to comply with medical certification requirements of state or federal family and medical leave laws, or (b) to be used to monitor the adverse effects of hazardous workplace exposures;

3. prohibits disclosure of genetic information, except: (a) upon the employee's request, (b) to an occupational or other health researcher, (c) pursuant to court order, (d) to a government official investigating compliance with this law, (e) in connection with the employee's compliance with the FMLA or state family and medical leave laws, and (f) to a public health agency; and

4. requires that genetic information received by the employer to be maintained confidentially and disclosed to the employee only.

Employer violations will be subject to administrative claims/lawsuits like those under Title VII of the 1964 Civil Rights Act. GINA requires the U.S. Equal Employment Opportunity Commission (EEOC) to issue final regulations by May 21, 2009.

Published: 05/2008