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Let’s Get to Know GINA

We’ve seen “GINA” around the workplace since the late 2000s, but how well do employers know “The Genetic Information Nondiscrimination Act (GINA)?”

In 2004, The “Human Genome Project” published the completed human genome sequence. This discovery promised many new avenues for finding medications and treatments specific to the information that literally makes us one-of-a-kind. The Equal Employment Opportunity Commission (EEOC) would later define “Genetic Information” as “information about an individual’s genetic tests and the genetic tests of an individual’s family members, as well as information about the manifestation of a disease or disorder in an individual’s family members (i.e., family medical history).”

While the potential for amazing breakthroughs was clear, it was also clear that this new information must have clear boundaries about what employers may or may not do with it. That was the primary motivation behind implementing GINA in 2008.

GINA, in its entirety, “prohibits discrimination on the basis of genetic information” and has far-reaching implications in many aspects of our society. However, it’s Title II of GINA that pertains to genetic information and employment. Title II was added in 2009 (and updated in 2016) and specifically prohibits the use of genetic information within the realm of employment, and is enforced by the EEOC. According to the EEOC’s Office of Field Operations,Title II primary consists of three prohibitions, and each one, and twelve exceptions to those prohibitions, are discussed below:

1. GINA prohibits the use of genetic information to make employment decisions (“in all circumstances, with no exceptions”)

It’s pretty easy to see how this section of GINA would help employers avoid discrimination. Some obvious examples would be if an employer did not hire someone because they have Down Syndrome or a “higher likelihood” of Sickle Cell Anemia. These, and many others, are examples of clear discrimination.

This prohibition also protects employees from well-intentioned, albeit, misguided employment decisions. For example, we all know some jobs are much more stressful than others and that stress may increase the risk of a heart attack. If someone has a family history of heart attacks, it might be a good idea for that person to avoid high-stress jobs; however, it is never the role of the employer to make that decision. There are often just too many factors to consider when determining the risk factors of a heart attack, and it’s up to every individual employee to understand their own risk factors and make the best decision for themselves.

2. GINA restricts the acquisition of genetic information (with six exceptions)

Purposeful and intentional acquisition of genetic information is always prohibited; however, the law does allow the acquisition of genetic information if it is unintentionally, inadvertently, and/or accidentally obtained through one of the six following scenarios:

  1. “Where the information is acquired inadvertently, in other words, accidentally;
  2. As part of a health or genetic service, such as a wellness program, that is provided by the employer on a voluntary basis;
  3. In the form of family medical history to comply with the certification requirements of the Family and Medical Leave Act, state or local leave laws, or certain employer leave policies;
  4. From sources that are commercially and publicly available, including newspapers, books, magazines, and electronic sources (such as websites accessible to the public);
  5. As part of genetic monitoring that is either required by law or provided on a voluntary basis; and
  6. By employers who conduct DNA testing for law enforcement purposes as a forensic lab or for human remains identification” (EEOC.gov).

3. GINA requires that genetic information be kept confidential (with six exceptions)

If genetic information is inadvertently acquired, it’s the responsibility of the employer to keep that information confidential, going so far as to require all employers to keep written records in a separate medical file, apart from other personnel information.

However, an employer may disclose genetic information only if one of the six following scenarios occur:

  1. “To the employee or family member about whom the information pertains upon receipt of the employee’s or family member’s written request;
  2. To an occupational or other health researcher conducting research in compliance with certain federal regulations;
  3. In response to a court order, except that the covered entity may disclose only the genetic information expressly authorized by the order;
  4. To government officials investigating compliance with Title II of GINA, if the information is relevant to the investigation;
  5. In accordance with the certification process for FMLA leave or state family and medical leave laws; or
  6. To a public health agency only with regard to information about the manifestation of a disease or disorder that concerns a contagious disease that presents an imminent hazard of death or life-threatening illness” (EEOC.gov).

The Future Role of Genetic Information and Employment

A bill titled “H. R. 1313” was introduced to the House of Representatives in 2017 that would modify GINA and the ADA prohibitions to allow employers to require employees to submit to genetic testing for use within a workplace wellness program. The motivation was to allow employers to give “favorable treatment to individuals with adverse health factors, such as a disability,” according to Congress.gov; however, employers could also increase health insurance premiums for employees who refuse to take the tests, according to an article by The National Law Review. While this particular bill did not get past committee, it’s a reminder that things may change and employers should always keep up-to-date on the latest developments regarding GINA.


Within the realm of medical science, acquiring genetic information and acting on that information may (and already has) saved countless lives. However, within the realm of employment, genetic information continues to be extremely protected. GINA provides some very clear boundaries on how genetic information should be handled by employers.

In short, genetic information should never be purposefully sought by an employer. Nevertheless, many employers will often inadvertently acquire genetic information about an employee within one of the scenarios described above. When that happens, employers must ensure that information is 1. Never used to make employment decisions and 2. Protected, filed separately from all other employee files, and only distributed under very particular guidelines.

For additional information regarding how to ensure your organization is following all guidelines set forth by GINA and other relevant laws, please contact us at www.newfocushr.com.

Updated by: Jason Love, CLSSGB

                       HR Assistant





New Focus HR is a human resources consulting and training company that services all organizations. Our expert team collaborates with businesses to attract, motivate, retrain and retain their biggest assets, employees. While engaged with an organization, our focus is to find solutions that improve the company’s internal HR-related practices while increasing results at the same time! Our focus. Your results.