By Lester Rosen, ESR President & Thomas Ahearn, ESR News Blog

The U.S. Equal Employment Opportunity Commission (EEOC) has issued final regulations implementing the Title II employment provisions of the Genetic Information Nondiscrimination Act of 2008 (GINA) that prohibits use of genetic information to make decisions about health insurance and employment, and restricts the acquisition and disclosure of such genetic information, according to a press release from EEOC.

Title II of GINA – which took effect on November 21, 2009 – prohibits genetic information discrimination in employment and represents the first legislative expansion of the EEOC’s jurisdiction since the Americans with Disabilities Act (ADA) of 1990. Congress enacted GINA due to concerns patients would decline to take genetic tests out of fear they could lose their jobs or health insurance if tests revealed adverse information.

Title II of GINA:

  • Prohibits the use of genetic information in employment.
  • Restricts employers from requesting, requiring, or purchasing genetic information.
  • Strictly limits the disclosure of genetic information.

The Act also imposes confidentiality obligations on employers and other covered entities – such as employment agencies, labor unions, and training programs – that possess genetic information. The definition of “Genetic Information” includes information about:

  • An individual’s genetic tests and the genetic tests of an individual’s family members.
  • Information about the manifestation of a disease or disorder in an individual’s family members (i.e. family medical history) that is often used to determine whether someone has an increased risk of getting a disease, disorder, or condition in the future.
  • An individual’s request for, or receipt of, genetic services, or the participation in clinical research that includes genetic services by the individual or a family member of the individual.
  • The genetic information of a fetus carried by and individual or by a pregnant woman who is a family member of the individual and the genetic information of any embryo legally held by the individual or family member using an assisted reproductive technology.

The GINA regulations include clarifications and refinements made in response to comments received during the notice and comment period. The final regulations implementing GINA are an effort to ensure that workers, job applicants and employers will have clear guidance concerning the implementation of this new law.

The final regulations also provide:

  • Examples of genetic tests;
  • More fully explain GINA’s prohibition against requesting, requiring, or purchasing genetic information;
  • Provide model language employers can use when requesting medical information from employees to avoid acquiring genetic information; and
  • Describe how GINA applies to genetic information obtained via electronic media, including websites and social network sites.

The Equal Employment Opportunity Commission has also issued question-and-answer documents on the final GINA regulations and ‘Genetic Information Discrimination’ that are available on EEOC’s website at

The EEOC has also issued a question-and-answer pamphlet for small businesses about Title II of GINA and implemented regulations, ‘Questions and Answers for Small Businesses: EEOC Final Rule on Title II of the Genetic Information Nondiscrimination Act of 2008,’ which is available at
The EEOC pamphlet for Small Business Owners (SBOs) includes the following questions SBOs may ask:

  • Who must comply with Title II of GINA?
  • Are small businesses covered by Title II of GINA required to comply with the law now?
  • What is “genetic information”?
  • What are examples of tests that would, and would not, be considered genetic tests?
  • Does GINA protect individuals from discrimination on the basis of impairments that have a genetic basis, such as certain forms of breast cancer?
  • Are there any situations in which an employer may use genetic information to make employment decisions?
  • Does Title II of GINA prohibit harassment and retaliation?
  • May an employer use genetic information about an applicant or employee to make decisions concerning health benefits?
  • May an employer ask for family medical history as part of a medical examination of a job applicant or employee?
  • Are there any situations in which a small business may obtain genetic information without violating GINA?
  • When is the acquisition of genetic information considered inadvertent?
  • What does GINA say about the acquisition of genetic information when an employer offers health or genetic services, like a wellness program?
  • Why do GINA and the final rule include an exception that allows an employer to acquire family medical history as part of the Family and Medical Leave Act (FMLA) certification process, under certain state or local laws that allow employees to take leave to care for a family member, or under certain employer leave policies?
  • When would the exception permitting acquisition of genetic information from sources that are publicly and commercially available apply?
  • May an employer conduct genetic monitoring to see if employees are being affected by harmful substances in the workplace?
  • What does GINA say about whether an employer may acquire genetic information for law enforcement purposes or for human remains identification?
  • What should an employer do to comply with GINA when lawfully requesting health-related information from an employee?
  • Must the warning be provided every time an employer requests health-related information from an employee?
  • What if an employer does not provide a warning like the one the EEOC suggests when it requests health-related information and receives genetic information in response?
  • What are GINA’s rules on confidentiality?
  • What effect does Title II of GINA have on other laws addressing genetic discrimination in employment?
  • What happens when an employee files a charge under GINA?
  • What are the remedies for a violation of GINA Title II?

For more information on the Genetic Information Nondiscrimination Act (GINA) of 2008, visit:

Employment Screening Resources (ESR) – a background check company that does not use genetic information in background check reports – encourages all employers to read the EEOC pamphlets for a helpful overview of GINA and how it impacts businesses generally, and to also check the ESR News Blog for any updates for this subject and other legal matters. 

For more employment screening information for employers, visit Employment Screening Resources (ESR) at

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