The Genetic Information Nondiscrimination Act Finally Becomes Law

In May, President Bush signed into law the Genetic Information Nondiscrimination Act of 2008 (GINA), which prohibits employers from discriminating against applicants and employees based on genetic tests or genetic information. The new law also prohibits health insurers from restricting enrollment and premium adjustments for health insurance on the basis of genetic information or genetic services.

Effective Dates

GINA requires the U.S. Equal Employment Opportunity Commission (EEOC) to issue final regulations within one year of enactment, and the law’s effective date is 18 months after enactment. The health insurance provisions of GINA require the Secretary of the U.S. Department of Health and Human Services (HHS) to issue final regulations within nine months of enactment, with the health insurance provisions becoming effective one year after enactment.

The bill, which passed the Senate by a vote of 95-0 and the House by a margin of 414-1, reflects its bipartisan support in Congress after more than 10 years of negotiations among the business community and various civil rights and disability groups to arrive at an acceptable version.

What Was the Basis for the New Law?

Proponents of the federal legislation argued that it was needed to eliminate fear of discrimination and reported instances of discrimination where no legal actions were initiated. They cited numerous polls to show that fear of adverse employment actions and denial of access to health insurance are a widespread reason why individuals decline to take genetic tests to determine their propensity (“genetic markers”) for a future genetic-based disease or condition, or to engage in clinical testing which could lead to the diagnosis, treatment, and possible cure for life-threatening, genetically-based conditions such as various forms of cancer. Major elements of the scientific community, led by the National Institutes of Health and the Human Genome Project, backed up the polls and strongly supported the legislation.

What is “Genetic Information”?

Under the new law, “genetic information” is defined 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.

GINA prohibits the collection of genetic information as well as its use in the workplace, with a number of important exceptions. For example, as a result of several carefully crafted exceptions, the law 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), or where health or genetic services are offered by an employer (i.e., “wellness” programs), or where genetic information and family medical history are “commercially and publicly available” (e.g., obituaries of family members in newspapers, magazines, periodicals and books). Also, an employer may receive such information based on the individual’s prior, knowing, voluntary and written authorization, or where it is received in compliance for medical certifications under the federal Family and Medical Leave Act (FMLA) or similar state laws, or in several other specified circumstances.

However, although inadvertently or permissibly received, such information may not be used for purposes of prohibited employment actions based on genetic information.

What GINA Requires

For all employers, under Title II of GINA (Employment Discrimination), the new law:

(1) Prohibits discrimination on the basis of genetic information, without regard to how the information is derived by the employer, in hiring, termination, compensation, and other personnel actions such as promotions, classifications and assignments;

(2) Broadly prohibits employers from requiring genetic testing and from purchasing or collecting genetic information, except in several limited and clearly-defined exceptions such as where the information is: (a) required to comply with medical certification requirements of state or federal family and medical leave laws, (b) to be used to monitor the adverse effects of hazardous workplace exposures, and (c) the employer conducts DNA analysis for law enforcement purposes as a forensic laboratory;

(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) Provides for genetic information received by the employer to be maintained confidentially and disclosed to the employee only.

Remedies and enforcement of Title II (Employment Discrimination) under GINA are the same as those under Title VII of the 1964 Civil Rights Act, with the exception of “disparate impact” claims which are not allowed under GINA.

Title I (Health Insurance)

As to health insurers, under Title I (Health Insurance) the new law applies to group health plans, individual plans, and Medicare supplemental plans.

Title I:

(1) Prohibits the use of genetic information in enrollment restrictions and premium adjustments;

(2) Prohibits health plans and insurers from requesting or requiring genetic testing; and

(3) Applies to all health insurance plans, including those under federally-regulated ERISA plans, state-regulated

plans, and private individual plans.

GINA requires amendments to the privacy regulations under the Health Insurance Portability and Accountability Act of 1996 (HIPAA), providing that “genetic information” must be treated as health information and that use or disclosure of such information will not be considered a “permitted use or disclosure” under those regulations. Especially for self-insured employer plans, Title I provides significant new penalties.

NOTE: This article was drafted by the attorneys of Ogletree Deakins, a national labor and employment law firm that represents management. This information should not be relied upon as legal advice.

This article appears in the July 2008 issue