Richard D. Alaniz

It may sound like the plot from a science fiction movie - through high-tech genetic testing, someone finds out she may develop a serious disease in a few years that could affect her ability to do her job. Those test results start to immediately impact her life, though, when her company fires her and she can’t get health insurance because of these future health risks.

This is no summer thriller, though, and last year Congress took steps to ensure this particular scenario does not become reality. In May 2008, the Genetic Information Nondiscrimination Act of 2008 (GINA) was enacted to ensure that advances in genetics and genomic medicine would not lead to discrimination in employment and insurance coverage.

An 18-month implementation phase for GINA began once President George W. Bush signed the act into law. A year after the signing, the U.S. Equal Employment Opportunity Commission (EEOC) undertook public comment in order to ensure various aspects of the law were clear for employers, insurers, and workers. The final rule for GINA is scheduled to be implemented on Nov. 21, 2009.

“GINA is an important piece of legislation,” said Acting EEOC Vice Chair Christine M. Griffin when the commission opened up the public comment period earlier this year. “As a deliberative body, we want to ensure that the intent of Congress is properly carried out through our regulations.”

In large part, GINA was enacted in recognition of how the field of genetics and the decoding of the human genome has progressed recently. Now, tests exist that can tell people whether they may be at risk of developing a specific disease or disorder. But as the knowledge of individual risk has grown, so have the concerns that individuals could lose their health insurance or jobs if insurers and employers know about their specific risks. GINA is designed to prohibit discrimination against any type of genetic information, so the public does not have to worry about fallout from having genetic tests done or participating in research studies to examine genetic information.

Congress considered various regulations on genetic discrimination for more than 10 years before GINA’s passage. For most companies, genetic testing discrimination may seem like an issue far off on the horizon, but the EEOC brought its first court action regarding workplace genetic testing discrimination in 2001. In that case, the EEOC settled a claim with Burlington Northern Santa Fe (BNSF) after the EEOC sought a preliminary injunction to end genetic testing of BNSF employees who filed claims for work-related injuries based on carpal tunnel syndrome.

According to the EEOC, BNSF carried out the genetic testing program without the knowledge or consent of its employees, and the company threatened to fire at least one worker who failed to submit a blood sample for a genetic test. As part of its settlement with the EEOC, BNSF admitted it had tested some employees for a genetic marker and agreed not to require further blood tests, analyze any of the blood it already had from employees, or retaliate against anyone who was opposed to genetic testing.


GINA has two components. The first part applies to group health plans sponsored by private employers, unions, state and local governments, and those who issue group and individual health insurance plans and those who issue Medicare supplement insurance.

Title II is the section that most affects employers, and it prohibits the use of genetic information in employment decisions, restricts the acquisition of genetic information by employers, and strictly limits how this type of information can be disclosed. GINA applies to employers with 15 or more workers, and it protects the same groups that are protected by Title VII of the Civil Rights Act of 1964.

In May 2009, after the initial comment period ended, the EEOC released its proposed regulations for GINA. According to the commission, the proposed regulations “attempt to clarify the definition of genetic information and provide guidance both on the limitations on acquisition of genetic information and ways to limit disclosure of genetic information acquired.”

These proposed regulations have several aspects that employers need to be aware of and prepare for:

Defining Genetic Information
The act defines “genetic information” as information about an individual’s genetic tests, genetic tests of a family member, and family medical history. It does not include information about the sex or age of an individual or the individual’s family members, or information that an individual currently has a disease or disorder.

According to the act, in general, “genetic test” means an analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detects genotypes, mutations, or chromosomal changes.

Prohibited Practices
Under Title II of GINA, employers are prohibited from using genetic information to make decisions that relate to the terms, conditions, or privileges of employment, and there are no exceptions to this rule, according to the EEOC.

It also prohibits employers who are covered by GINA from deliberately acquiring genetic information about their workers, and employers are also barred from any sort of retaliation based on genetic testing.

With some limited exceptions, it requires confidentiality about genetic information of employees. Those exceptions include a “water cooler” exception, when an employer inadvertently learns about an employee’s genetic information. For example, this could occur when a supervisor overhears a conversation between employees or when an employee submits genetic information when asking for a reasonable accommodation under the Americans with Disabilities Act or other laws.

Confidentiality Requirements
When employers do receive information about their employees’ genetic information, it must be treated with the same degree of confidentiality as other medical information. According to the EEOC, it must be kept confidential and, if it is in writing, the information must be kept separate from other personnel information.

Claims and Harassment
As it is written, GINA does not allow for disparate impact claims. However, six years after the act takes effect, Congress has instructed that a commission be formed in order to study the possibility of allowing such claims.

The issue of harassment is not specifically addressed in GINA. However, according to the EEOC, the language Congress used in creating this particular act is similar to language in other employment laws, and harassment falls into a wide range of prohibited discrimination acts.

Health Benefits
To some extent, GINA applies to employment decisions based on health benefits. Title II of GINA includes a firewall provision that is intended to eliminate any “double liability.” With this firewall, employees cannot assert Title II claims regarding genetics provisions that are subject to enforcement in ERISA, the Public Health Service Act, and the Internal Revenue Code.

With the firewall, health plan or issue requirements and prohibitions should be addressed through those regulations, and not Title II or other employment discrimination procedures. However, the firewall does not protect employers from liability if they make any employment decisions based on health benefits that violate Title II.

Available Remedies
Employees with GINA-related claims of discrimination may seek the same type of remedies that are found in Title VII: reinstatement, hiring, promotion, back pay, injunctive relief, pecuniary and non-pecuniary damages, which includes compensatory and punitive damages, and attorneys’ fees and costs. Title VII’s cap on combined compensatory and punitive damages also applies to actions under Title II of GINA.


Even before the final rule takes effect in November, employers should prepare themselves and educate their human resources staff, managers, and employees about GINA’s requirements.

Genetic discrimination should be added to the list of prohibited and unacceptable behaviors in the workplace, and this information should be communicated to all employees. The employee handbook should be updated accordingly, and new employee training should include information about GINA. Human resources personnel, supervisors, and managers in particular should understand their roles and responsibilities under the act.

Companies may also wish to consult with counsel to find out if they are subject to any other laws that regulate genetic discrimination. State or local laws may provide greater protections to employees than GINA does, and the EEOC has said those laws take precedence.

Companies that require pre-employment physicals for certain positions will have to revisit their policies to ensure that these exams comply with the new law. Typically in a physical exam, doctors ask about family medical history. However, that type of information cannot be included under GINA.

When it comes to requesting medical information, employers should develop clear guidelines about which types of questions can be asked and which are prohibited under GINA. Employers may want to designate company representatives to oversee those types of questions and information and provide them with extra training to be sure they are in compliance.

Because of privacy regulations, employers should already be storing medical information about employees separately from their personnel files. If they are not doing that, they should begin immediately.

Genetic testing may seem like science fiction, but it has already entered the mainstream for many people. To stay compliant with genetic anti-discrimination laws and head off potential lawsuits, companies need to familiarize themselves with new regulations that will take effect in November and educate all employees about them.

Publication date:07/20/2009