GINA is the Genetic Information Nondiscrimination Act. It prohibits the discrimination of individuals in health insurance and employment while protecting the privacy of one’s genetic information. Under GINA, genetic information includes any individual’s or family member’s genetic tests or history. GINA was signed into law in 2008 by George W. Bush after several years of review. With foresight into the future of genome sequencing, the intent was for people to be able to test their genetic information without fear that it would impact healthcare costs or employment options.

GINA includes important protections that allow for continued genetic research without fear of discrimination based on genetic data.

GINA includes workplace and health insurance protections that allow anyone to get genetic information without fear of discrimination from their health insurance provider or employer. Employers are prohibited from making decisions about cost, eligibility, or coverage based on genetic information. It’s important to note that GINA’s protections only apply to health insurance—not life, disability, or other types of insurance. For example, if one of your employees goes to the doctor, they provide that physician with a family medical history, have blood work done, and submit to other diagnostic tests. For the employee and for the physician, the intent of these tests is to find a cause of specific concern. However, much of the genetic information and family history that was provided to your physician is now available to your health insurance companies. GINA prohibits them from using this information to set costs or deny coverage to individuals.

GINA prohibits employers from discriminating against individuals based on genetic information in job-related scenarios such as hiring, firing, promotions, or demotions. An employer may never use genetic information to make an employment decision because genetic information is not relevant to an individual's current ability to work, writes the U.S. Equal Employment Opportunity Commission. To avoid potential liability, employers should not ask questions about an employee’s or candidate's genetic information or family history. If you are in a situation that you feel you must obtain this information, consult with an employment attorney prior to moving forward.

GINA protects privacy and safeguards against the misuse of genetic information for people who participate in research. You can learn more about these topics through government agency websites and informational pamphlets.

Employers with 15 or more employees can stay compliant with GINA in several ways.

Make sure that you have the most up-to-date version of the “Equal Employment Opportunity is the Law” posted in all facilities.

Review your company handbook for all policies related to discrimination, harassment, retaliation, and equal opportunity. If needed, update the policies to make it clear that any type of discrimination based on genetic information is not tolerated.

Evaluate your company’s record-keeping practices to ensure that any files related to an employee’s health, medical or genetic background and information are stored securely. These forms include information pertaining to medical leaves of absence, work or non-work-related illness or injury, and any documents related to medical examinations required by the workplace. To limit company exposure to risk, you should be careful that genetic information is not requested as part of the process for these scenarios. Any request of medical information should be explicitly and clearly job-related, and should not ask about family history or require genetic testing. All of these documents should be stored in a locked area separately from general employee information to restrict access and ensure confidentiality.

Your workforce should be informed of GINA and how to limit the risk of exposure through self-disclosure of genetic information. This will help your workforce proactively protect the company from risk of GINA violations.

Many companies host employee wellness activities, sponsor health-focused events, or otherwise encourage employees to improve their overall health and wellness. If your company has a program like this, review it to ensure that it complies with GINA and does not require employees to provide genetic information or family history.

Because GINA applies to both health insurance and to the workplace, there are two separate avenues for reporting a violation based on where the violation occurred.

Individuals can file a claim of discrimination with the Equal Employment Opportunity Commission (EEOC). This is called a Charge of Discrimination and requires a signed statement that the employer or labor organization discriminated against the filer. This can be done online with the EEOC or by going to your closest EEOC office.

To report a health insurance violation, individuals should contact their state health insurance commissioner. The National Association of Insurance Carriers is a great resource to help identify the correct course of action for each state.