The Genetic Information Nondiscrimination Act (GINA) was signed into law in 2008, and the employment provisions will become effective on November 21, 2009. The EEOC has published proposed regulations for GINA and will finalize those regulations sometime prior to November 21. Because this article is not based on final regulations, some of the following information could change.

As medical science advances, it is becoming easier and more common for tests and studies to be conducted based on human DNA, RNA, chromosomes, proteins, or metabolites. Title II of GINA, which is the focus of this summary and which addresses access and use of genetic information by employers, originated from a concern that employers may learn this information and use it to discriminate against employees and applicants.

The basics of Title II of GINA are easy to remember:

• Discrimination based on genetic information is prohibited.

• Nondisclosure: Genetic Information must be kept confidential.

• Acquiring genetic information is prohibited.

These basics are explained more below, but first an understanding of the meaning and scope of "genetic information" is critical to compliance with the law.

Understanding the Meaning of "Genetic Information"

An individual’s "genetic information" includes genetic test results, family medical history, and the genetic tests of family members (including a fetus or embryo). Examples of genetic information include the following:

• Knowledge that an individual has the gene that will cause the individual to inevitably develop Huntington’s disease

• Knowledge that several siblings of an employee have had heart disease (family medical history)

• Knowledge that an individual has been tested for a genetic disorder or is participating in a medical study of a genetic disorder, without knowing the results

Tests for viruses, drugs, alcohol, blood counts, and cholesterol would not be considered a "genetic test" under the law because those tests do not analyze genes or chromosomes. Information about age and sex is specifically excluded.

Discrimination Is Prohibited

Title II of GINA makes it unlawful for covered employers to discriminate against employees and applicants on the basis of genetic information. Just as Title VII of the Civil Rights Act prohibits discrimination based on race and sex, employers will be prohibited from taking genetic information into account with regard to any term or condition of employment. It also will be unlawful for employers to retaliate against someone who complains about a practice that violates GINA. Generally, employers with 15 or more employees are covered by GINA.

Examples of unlawful discrimination under GINA include the following:

• An applicant tells a prospective employer that his mother recently died from colon cancer, and the employer does not offer the applicant the job based on fear that the applicant could also get the disease.

• An employee tells her employer that she has a gene that increases her risk for developing breast cancer. Based on this information, she is denied a promotion that will require much travel and stress.

• An employee tells her manager she is having genetic testing done on her fetus. The manager does not believe this testing should be done, and she lowers the employee’s performance rating.

The EEOC speculates that the law also will be interpreted to prohibit harassment based on genetic information since the statute borrows much of its language from Title VII of the Civil Rights Act.

Nondisclosure: Genetic Information Must Be Kept Confidential

Another major piece of GINA is its requirement that any genetic information that is acquired must be kept confidential. If a manager overhears a water cooler conversation in which an employee says he is a carrier of a cystic fibrosis genetic mutation, the manager must not share that information with anyone else. Or if an employee tells a manager she is participating in a study of genetic information, the manager must not tell anyone. Learned genetic information must be kept confidential.

GINA recognizes that employers may also learn about genetic information when employees submit leave of absence forms or request accommodation under the Americans with Disabilities Act (ADA). This genetic information also must be kept confidential. If the information is in writing, it must be kept in a separate file and may be kept with the other medical records that are maintained in compliance with the ADA.

GINA allows disclosure of genetic information in very limited circumstances; for example, disclosure to occupational or health researchers conducting lawful research, to a court upon court order, or to a government official reviewing compliance with GINA is permitted. It does not appear the law allows a "need to know" exception, so managers might violate the law if they tell their manager or HR partner about the genetic information.

Acquiring Genetic Information Is Prohibited

GINA also prohibits employers from acquiring genetic information by either asking the employee or family member, by paying to retrieve the information, or by specific efforts to retrieve information, such as Internet searches.

The law does recognize that sometimes managers will learn about this type of information without actively seeking it. For example, an employee might tell the manager, or the manager might ask a general question such as "How are you?" and the employee will reveal genetic information in response. Or a manager might see an article in a publicly available source, such as an obituary in the newspaper that discloses a parent of an employee died of a hereditary disorder. This information that is learned, without specifically seeking to acquire it, is not considered a prohibited acquisition of genetic information.

Additionally, if an employer acquires genetic information in response to inquiries to certify a request for accommodation under the ADA or a leave under the Family and Medical Leave Act (FMLA) or similar law, that is not considered an unlawful acquisition of information.

Employers with voluntary wellness programs should review GINA as it pertains to the manner in which these programs can lawfully seek genetic information.

Next Steps

The practical implications of GINA are that employers should revise their workplace equal employment opportunity, non-discrimination, and harassment policies to include genetic information as a protected category. Likewise, any policies concerning the confidential nature of medical information should be revised to reflect the utmost protection of genetic information. Managers need to understand the DNA of GINA and should be educated on the basics of this new law.

For further information on GINA, refer to the EEOC’s proposed final regulations and background history at http://edocket.access.gpo.gov/2009/pdf/E9-4221.pdf.