Are You Prepared for Genetic Information Discrimination Claims?

March 13, 2013

In 2008, Congress enacted, and President George W. Bush signed into law, the Genetic Information Nondiscrimination Act (GINA). Title II of GINA prohibits the use of genetic information in any employment decision. The law also restricts employers from requesting, requiring, or purchasing genetic information about employees or job applicants. Finally, GINA limits disclosing information and requires that genetic information in your company’s possession be maintained in a manner that protects its confidentiality.

The final regulations implementing GINA became effective January 10, 2011. Courts are just beginning to decide cases interpreting the Act. Below is a description of GINA’s prohibitions and requirements and steps you should take to protect against discrimination claims under the Act.

Basics of GINA

In 2000, the first human genome sequence was completed. Since then, genetic testing, which allows the determination, through DNA analysis, of a person’s propensity to develop numerous diseases and medical conditions, including various forms of cancer, has proliferated. In the December 24, 2012, edition of Time magazine, the cover story discussed genetic testing now available.

Although discrimination based on genetic information wasn’t identified as an actual problem in 2008, Congress enacted GINA to prohibit discrimination and provide protection to employees and purchasers of health insurance. Congress’ concern was that individuals wouldn’t obtain genetic tests, seek preventive treatment for certain conditions, or participate in medical studies if the information resulting from those activities could be used against them by employers. Additionally, Congress was concerned that employers may not hire applicants or may fire employees based on genetic information after concluding that employing them would increase healthcare costs.

Congress modeled GINA after Title VII of the Civil Rights Act of 1964, the federal antidiscrimination law that prohibits discrimination in the workplace based on race, color, gender, creed, and national origin. Employees must file an administrative complaint with the Equal Employment Opportunity Commission (EEOC) alleging a violation of GINA rather than going directly to court. The EEOC may investigate or conciliate the charge of discrimination. If the agency is unsuccessful in resolving the complaint, the employee can file suit in court. GINA applies to employers with at least 15 employees.

GINA generally isn’t intended to address medical conditions that have already manifested. For example, if genetic testing shows an employee has a propensity to develop breast cancer, an employer cannot discriminate on the basis of that genetic information in making employment decisions. However, if the employee is currently suffering from breast cancer, GINA generally won’t apply; rather, the Americans with Disabilities Act (ADA) or state disability discrimination law may come into play.

GINA includes a whole set of terms that are defined either specifically in the law or in the regulations implementing it. Those terms include family medical history, genetic information, genetic monitoring, genetic services, and genetic testing. A number of terms are borrowed from other laws, such as Title VII and the Employee Retirement Income Security Act (ERISA).

Antidiscrimination Under GINA

GINA prohibits covered employers from considering genetic information when making employment decisions, including hiring, firing, promotion, and discipline decisions as well as decisions relating to other terms and conditions of employment. GINA also prohibits you from providing different benefits on the basis of genetic information. The Act generally doesn’t cover existing impairments, even if they may have a genetic basis. Rather, GINA protects individuals from discrimination because their employer believes they are at an increased risk of developing a condition in the future.

Employment applications shouldn’t include any inquiries that could result in a prospective employee disclosing genetic information. The EEOC takes the position that like other antidiscrimination laws, GINA prohibits harassment in the workplace based on genetic information. The Act’s prohibition against discrimination also includes requiring an employee to undergo a mandatory genetic test to be eligible for health benefits. Finally, GINA prohibits retaliation because an employee opposed genetic information discrimination in the workplace or participated in protected activity such as filing an administrative complaint alleging a GINA violation.

At this time, GINA doesn’t permit a claim under a disparate impact theory, meaning an employee cannot claim that a neutral employment practice or policy disproportionately affected him. However, five years after it was first enacted, the law provides for the establishment of a commission to review and make recommendations on whether disparate impact claims should be available.

Acquiring Genetic Information

The second primary prohibition under GINA bars employers from requesting, requiring, or purchasing genetic information about employees or their family members unless the request falls within one of the specific statutory exceptions. However, even if genetic information is properly obtained under one of the exceptions, you may not use the information in employment decisions and you still must keep it confidential.

One of the primary employment areas in which acquiring protected information arises is requests for employment- related medical information. Such a request may occur in the context of postoffer medical exams, fitness-for-duty exams, requests for information to accommodate a disability, Family and Medical Leave Act (FMLA) certification, or simple medical excuses for an employee’s use of sick leave. Requests for medical information under those and related circumstances can result in a healthcare provider intentionally or inadvertently providing genetic information about an employee or her family member.

Your request for a medical exam or medical information that results in your company obtaining genetic information can constitute a violation of GINA and result in liability for the company. Specific language should be included in all requests for medical information to insulate you from liability. Moreover, there are six exceptions to the prohibition against requesting genetic information, requiring an employee to provide such information, or purchasing genetic information. Each exception has detailed regulations discussing its scope as well as conditions or qualifications that employers must meet.

The first exception occurs when an employer inadvertently obtains genetic information. That includes overhearing conversations between coworkers or accessing information on social media when you have the employee’s consent to access a particular social media website. This exception also includes information obtained from healthcare providers if the employer used the appropriate safe-harbor language.

The second exception relates to employer-offered genetic services, including wellness programs. An employee must provide knowing, voluntary, and written advance consent under this exception. The information must be disclosed to the employer only in aggregate form, not for individual employees. GINA includes special rules for offering financial incentives for participating in wellness programs.

The third exception involves the FMLA and similar state or local leave laws. Although this exception should allow an employer to obtain genetic information in an FMLA certification from a healthcare provider, some commentary suggests that it still may be the better practice to include the safe-harbor language in all FMLA requests.

Under the fourth exception, employers are allowed, in certain circumstances, to obtain genetic information from commercially or publicly available documents. However, this exception doesn’t apply to court records, medical databases, or research databases. Additionally, if the employer’s intent in accessing the commercial or public records is to obtain genetic information, then the exception will not apply.

The fifth exception is intended to allow employers to monitor the biological effects of toxic substances in the workplace. Like the other exceptions, this one requires employers to meet a number of conditions before it applies. The sixth and final exception is a narrow law enforcement purposes exception: When an employee’s DNA may be needed for quality-control purposes to detect sample contamination, the employer will not violate GINA by obtaining the employee’s genetic information.

Nondisclosure and Confidentiality

GINA, like the ADA, includes a provision that requires employers to keep an employee’s genetic information confidential. The good news is that as long as you comply with the ADA and keep medical information locked up and separate from the rest of an employee’s personnel file, you will comply with GINA. We recommend that access to genetic information be highly restricted. Unlike some medical information that may need to be shared with supervisors for reasonable accommodation purposes, there’s no reason to share genetic information with most supervisors or managers.

In addition to its confidentiality obligations, GINA prohibits the disclosure of genetic information, with certain limited exceptions. Like the exceptions for acquiring genetic information, the exceptions for disclosing such information to third parties are narrow and often involve specific requirements to insulate you from liability. For example, if you’re involved in a legal proceeding and receive a discovery (pretrial fact-finding) request or a subpoena, you cannot simply turn over records that include genetic information, even if there’s a general protective order in place. Rather, a specific court order that complies with GINA’s mandates is required. It’s important to pass along to your legal counsel any requests you receive in a legal proceeding that might result in your disclosure of genetic information.

What’s an Employer to Do?

So how do you comply with GINA’s requirements? Here are some suggestions:

  • Make certain to include a safe-harbor notice with all requests for medical information or any employment-related medical exam. Modify all forms given to healthcare providers so they expressly state that family and medical history and other genetic information shouldn’t be provided. The EEOC has included acceptable safe-harbor language in its regulations.
  • Create workplace procedures to limit the risk of improperly obtaining, using, or disclosing genetic information.
  • Educate managers and supervisors on their GINA obligations.
  • Make certain your HR personnel are aware that genetic information cannot be provided in response to discovery requests or a subpoena.
  • Make certain that all genetic information is maintained in a confidential file separate from personnel files.
  • If you have a wellness program, review it to ensure it’s in compliance with GINA’s requirements.
  • Make certain your workplace postings include the required GINA information enumerating employees’ rights.
  • Revise your equal employment opportunity (EEO) policies, including your antiharassment policy, to include genetic information discrimination.
  • Implement procedures that strictly limit access to genetic information.
  • Review your employment application to confirm that it doesn’t request genetic information.

This article was featured in the March 2013 issue of the Wisconsin Employment Law Letter, which is edited by Attorney Timothy Edwards and published by BLR®—Business & Legal Resources. Reproduced here with the permission of BLR®—Business & Legal Resources.

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For more information about "Are You Prepared for Genetic Information Discrimination Claims?," contact Michael J. Modl at mmodl@axley.com or 608.283.6702.