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Employment Provisions of the Genetic Information Nondiscrimination Act

Overview Exceptions Definitions Compliance State Laws Rate this QuickCounsel

Overview

In May 2008, the Genetic Information Nondiscrimination Act (GINA) became law. GINA has two parts. Title I applies to group health plans sponsored by private employers, unions, state and local government employers, issuers in the group and individual health insurance markets, and issuers of Medicare supplemental insurance (Medigap). Title II applies to the same covered entities as Title VII of the Civil Rights Act of 1964, and prohibits use of genetic information in employment, restricts the acquisition of genetic information and strictly limits the disclosure of genetic information.

The US Equal Employment Opportunity Commission (EEOC) is empowered to issue regulations under Title II of GINA, and to enforce that title’s provisions. Title II of GINA applies to employers with 15 or more employees on November 21, 2009.

The remedies for violations of GINA are those available under Title VII.  GINA does not supersede state or local laws that may provide greater protection.  GINA is in addition to other rights and remedies that may exist under federal law, such as under the Americans with Disabilities Act.

On March 2, 2009, the EEOC issued its proposed regulations on GINA for public comment. The deadline to submit comments was May 1, 2009.

In addition to the protections provided against discrimination based on genetic information under the laws of 40 states, GINA prohibits all forms of disparate treatment in employment discrimination against applicants, employees, and former employees based on genetic information.  GINA does not create a claim for disparate impact discrimination.  GINA does prohibit limiting, classifying or segregating an employee based on genetic information, including prohibiting an employee from accepting or working in a position that might exacerbate a condition for which the employee has a genetic predisposition. GINA also prohibits retaliation.

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Exceptions

GINA prohibits employers from acquiring genetic information about applicants or employees, with the following very narrow exceptions:  

• The inadvertent request or requirement of family medical history of the employee or employee's family member(s).  The proposed regulations expand this exception to apply to information volunteered by employees, overheard, or otherwise received by accident.
  
  
• Aggregate information that is not individually identifiable, which was acquired in the provision of voluntary wellness programs that provide genetic testing or counseling.
   
• Information provided to an employer in connection with the certification requirements for a leave request under the federal Family and Medical Leave Act (FMLA) or state family and medical leave laws.
  
  
• Information from genetic monitoring either required by law (such as occupational safety and health laws) or specifically authorized in writing by an individual, with that individual’s knowing and voluntary agreement.
  
  
• Information to help law enforcement and the military with proper genetic identification.
  
  
• Publicly available information.

Even if genetic information is lawfully obtained under one of the exceptions, it may not be used to discriminate and must be kept confidential.  This means genetic information should not be stored in personnel files.

Genetic information may not be disclosed to others, except:

• To the person to whom the information relates
• To an occupational health researcher if the research is conducted under applicable federal regulations
• In response to a court order that specifically calls for the information (but not in response to discovery requests not governed by a court order)
• To government officials investigating compliance with GINA
• In connection with a request for leave under federal, state or local law
• To officials in connection with a contagious disease or imminent hazard of death or life-threatening illness

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Definitions

“Genetic information” is information about:

• An individual’s genetic tests
• Genetic tests of the individual’s family members (defined to include first through fourth degree relatives)
• The manifestation of disease or disorder in family members (e.g., family medical history)
• An individual’s request for or receipt of genetic services or participation in clinical research that includes genetic services
• The genetic information of a fetus or any embryo legally held by an individual or family member using assisted reproductive technology

Genetic information does not include the sex or age of any individual.

A “genetic test” is:

Genetic tests do not include:

“Manifestation” means:

Manifestation does not apply if a person simply tests positive for a genetic trait for a disease (even if the probability of manifestation at some point is 100 percent).  This is to avoid having a positive test be classified as a “pre-existing condition” under ERISA.

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Compliance

Employers should:

• Revise EEO policies to include prohibitions against discrimination based on genetic information.

• Post a new non-discrimination poster to be issued by the EEOC later in 2009 (before the November 21, 2009 effective date), prohibiting discrimination based on genetic information.

• Train human resources staff and managers on the requirements of Title II of GINA, and any applicable state or local laws.
  
  
• Make sure that any post-offer, but pre-employment medical examinations do not include any inquiries about family medical history.  Inform physicians conducting examinations for employers that they must now avoid questions about family medical history.
  
  
• Make sure any fitness-for-duty medical examinations or second fund, workers’ compensation data requests do not seek family medical history.

Employers should not:

• Seek genetic information in connection with any discussion of a reasonable accommodation of a disability.
  
  
• Make broad requests for information in connection with requests for leave. The EEOC’s proposed regulations suggest as a “best practice” that employers who ask employees to have health care professionals provide documentation of a disability to specifically state in the request not to provide family medical history or other genetic information should not be provided.
  
  
• Produce genetic information in response to a subpoena, unless the subpoena specifically calls for the production of this information.
  
  
• Use Internet resources, court records, or publicly available databases to acquire genetic information about applicants or employees.  The EEOC has asked for comments about whether this would extend to reviewing personal websites or social networking sites.
   
• Store family medical history information in personnel files, as this is genetic information that must be stored in a separate medical file.  As a practical matter, this means keeping documents associated with a leave to care for the serious illness of a family member apart from the personnel file.

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State Laws

Thirty-two states and the District of Columbia have laws prohibiting discrimination based on genetic information or characteristics. These include Arizona, Arkansas, California, Connecticut, Delaware, Hawaii, Illinois, Iowa, Kansas, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Missouri, Nebraska, Nevada, New Jersey, New Mexico, New York, North Carolina, Oklahoma, Oregon, Rhode Island, South Dakota, Texas, Utah, Vermont, Virginia, Washington, and Wisconsin.

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ACC and other resources

• ACC: Sample Form & Policy: Equal Employment Policy (including provisions relating to genetics)
• National Conference of State Legislatures
• National Cancer Institute 50 State Survey of Human Tissue Regulations
• Council for Responsible Genetics
• National Human Genome Research Institute
• Human Genome Project Information

Sponsor Resources

• Contact author Margaret Hart Edwards

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