Genetic Information Nondiscrimination Act Finally Becomes Law

New Federal Statute Prohibits Employer-Mandated Genetic Tests

President George W. Bush recently signed into law H.R. 493, also known as 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 adjusting premiums for health insurance on the basis of genetic information or genetic services.

GINA is the result of more than a decade of legislative negotiations and compromise. Ogletree Deakins/Ogletree Governmental Affairs shareholder Hal Coxson, who was involved throughout the legislative process and testified for the business community as an expert witness in both the House and Senate, observes: “Obviously, this is a broadly bipartisan law with a salutary purpose. It is not a simple law prohibiting employer-mandated genetic tests or the collection and use of genetic information. As with any new federal law, employers should expect efforts to expand it through federal regulations. There may be some litigation under GINA not before seen under state or other federal laws. For example, employment decisions may now be challenged on the basis that an employer came into possession of genetic information and then made an adverse employment decision.”

Effective Dates

GINA’s Title II (Employment Discrimination) requires the 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. Title I (Health Insurance) requires the Secretary of the U.S. De-partment of Health and Human Ser-vices (HHS) to issue final regulations within nine months of enactment, and Title I becomes 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, garnered bipartisan support in Congress after more than 10 years of negotiations among the business community and various civil rights and disability groups.

Basis For The New Law

Some opponents of GINA argued that the legislation was “a solution in search of a problem” since there is little evidence of actual employment discrimination on the basis of genetic information. In addition, there have been few, if any, actions brought against employers in the 34 states which currently have laws banning genetic discrimination in the workplace (which are not preempted by GINA), or under the “regarded as disabled” prong of the federal Americans with Disabilities Act.

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 cause 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.

“Genetic Information” Defined

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 provisions, 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 genetic information with the individual’s prior, knowing, voluntary and written authorization, or where the information is received in compliance with 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

Title II (Employment Discrimination)
Specifically, for all employers, Title II: (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 state or federal 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, the new law applies to group health plans, individual plans, and Medicare supplemental plans. This section: (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), such that “genetic information” must be treated as health information and that use or disclosure of this 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.

Important Amendments

In addition to some of the negotiated changes which restricted GINA’s definitions, several major improvements negotiated in the new law are designed to limit its potential for litigation. For example, litigation under the new law is limited to acts of intentional discrimination. “Disparate impact” on the basis of genetic information does not establish a cause of action under the new law. Also, GINA includes “firewall” protections between the employer and health insurers to prevent multiple actions and, in effect, “double-jeopardy.”

Note: This article was published in the May/June 2008 issue of The Employment Law Authority.