Genetic Information Nondiscrimination Act Takes Effect on November 21

November 19, 2009

By: Sanjeeve K. DeSoyza

Eighteen months after it was first signed into law by President Bush, Title II of the Genetic Information Nondiscrimination Act of 2008, also known as GINA, will take effect this Saturday, November 21, 2009. Title II prohibits employment discrimination based on genetic information, and imposes confidentiality obligations on employers who obtain such information.  Title II's requirements are described below.


In enacting GINA, Congress lauded the many advances in genetic research in recent years that may spur major medical breakthroughs in the detection, treatment and prevention of illnesses and diseases. It also found, however, that with this progress came increasing concern about the possible misuse of genetic information to discriminate in employment and health insurance coverage. As an example, Congress cited to legislation passed by some state legislatures in the 1970s mandating sickle cell anemia screening as a covert means of screening African-American applicants out of the workplace.

Employees appear to share Congress’s concern. In one national survey, 63% of participants indicated they would not take genetic tests for disease if the results could be accessed by their employers or health insurers. Another recent poll found 93% of respondents opposed to the use of genetic information by health insurers and employers.

Enacted in response to these growing concerns, Title II prohibits employers from using genetic information in making any decisions about hiring, firing, promotions or any other term or condition of employment. It also forbids employers from intentionally acquiring genetic information, imposes strict confidentiality obligations on those who do come into possession of such information, and prohibits retaliation against individuals who challenge acts made illegal by GINA or who have filed a charge or otherwise participated in an investigation, proceeding or hearing under the law. Although New York’s Human Rights Law has prohibited discrimination on the basis of genetic characteristics since 1995, the new federal law imposes restrictions not found in the state statute.

Title II’s protections extend to applicants, employees and former employees, and its restrictions apply to private and state and local government employers with 15 or more employees, employment agencies, labor unions, joint labor-management training programs, Congress and federal executive branch agencies.

Genetic Information
What is considered “genetic information” under the new law? The term encompasses not only information about an employee’s own genetic tests, but also information about the tests of the employee’s family members and the manifestation of diseases or disorders in those family members (i.e., family medical history). Covered “family members” can be those as distant as 4th degree relatives, including great-great grandparents and first cousins once removed. The term genetic tests generally refers to analyses of human DNA, RNA, chromosomes, proteins or metabolites that detect genotypes, mutations or chromosomal changes. Thus, a test to determine the likelihood that an individual will develop Huntington’s Disease is a genetic test and the results would constitute “genetic information” for purposes of GINA. On the other hand, information about the sex or age of a person is expressly carved out as not constituting genetic information.

Acquisition of Genetic Information
The new law imposes strict limitations on the acquisition of genetic information by employers. More specifically, employers are prohibited from requesting, requiring or purchasing genetic information about an employee or the employee’s family member except in very limited circumstances. One such exception, the so-called “water cooler” exemption, excuses employers who inadvertently learn genetic information. Examples may include a supervisor who overhears one employee tell another that her father has Alzheimer’s Disease or a manager who learns genetic information in response to a general health inquiry such as “how are you?” Another exception shields employers that acquire genetic information through responses to lawful requests for medical certifications under the federal Family and Medical Leave Act (“FMLA”) or similar state leave laws. Additional exceptions cover genetic information acquired through employer-offered health and genetic services, such as “wellness” programs, as well as to information obtained through commercially and publicly available sources such as newspapers or magazines. This last exception, however, does not apply to genetic information contained in medical databases or court records.

Notwithstanding these exceptions, Title II imposes a significant new restriction on the permissible scope of post-offer medical examinations. Although the Americans with Disabilities Act has for years allowed employers to require that all persons offered a position in a particular job category undergo a medical examination, they will no longer be permitted to obtain family medical history information or require that the individual submit to genetic testing as part of that examination.

Most importantly, regardless of whether the genetic information has been lawfully acquired or not, employers are strictly prohibited from using that information in making any employment-related decisions such as hiring, promotions, or termination.

On top of its strict limitations on the acquisition of genetic information, the statute also imposes significant confidentiality obligations on employers that possess such information. First, genetic information must be treated as a confidential medical record. If the information is in writing, it must be maintained in a medical file separate and apart from other personnel information. The information may be maintained in the same file as medical information subject to the ADA’s confidentiality requirements. Notably, genetic information obtained through commercially or publicly available sources – for example, information about the cause of death reported in a newspaper obituary – need not be maintained in the separate medical file.

Additionally, GINA prohibits the disclosure of genetic information unless such disclosure is: (i) to the employee (or family member, in limited circumstances) at his or her written request; (ii) to an occupational or other health researcher conducting research in compliance with specific federal regulations; (iii) in response to a court order so long as disclosure is limited only to genetic information expressly authorized by the order and the affected individual is notified of the order and the content of the disclosure; (iv) to government officials investigating compliance with GINA, provided the information is relevant to the investigation; (v) to comply with certification provisions of the FMLA and related state family and medical leave laws; or (vi) to public health agencies, limited to family medical history information related to a contagious disease that poses an imminent hazard of death or life-threatening illness and where notice is also given to the employee of the disclosure.

Remedies available for violations of Title II are the same as those available under Title VII. Unlike Title VII, however, GINA does not currently provide a cause of action for “disparate impact.” A commission will, however, be established six years after Title II becomes effective to review genetic science developments and to make recommendations to Congress as to whether a “disparate impact” cause of action should be added to the statute.

The Equal Employment Opportunity Commission (“EEOC”) has been charged with enforcing Title II. To that end, the EEOC issued proposed regulations in March 2009, but has yet to issue the final regulations. It has, however, issued an updated “EEO is the Law” poster to reflect the changes implemented by the new law. Employers have the choice of either printing and posting the new updated poster, printing and posting a supplemental poster  alongside the EEOC’s 2002 “EEO is the Law” or the Office of Federal Contract Compliance Programs 2008 “EEO is the Law” posters, or ordering a new poster through the EEOC Clearinghouse.