Demystifying GIPA (Genetic Information Privacy Act)

Jul 19, 2023

GIPA —Say WHAT?

The Illinois Genetic Information Privacy Act (“GIPA”) was first passed in 1998 in recognition that many people were worried their genetic information would be used without their consent or to discriminate against them. It prohibits certain companies from doing just that.

Hey there, Illinois residents! You live in one of the most extraordinary states. Illinois has the BEST pizza in the country, is home to some of the best music festivals, and we can’t forget the world-renowned Bears and Cubs, your beloved sports teams. However, Illinois is unique from all other states in more ways than you realize. Illinois’ state legislature enacted a law that affords Illinois residents extra protection when it comes to what information employers are permitted to ask their employees. So, let’s chat about GIPA.

Here’s the scoop on this legal advantage: Genetic information, such as family medical history reveals personal and private details about your health, ancestry, and potential health risks.  GIPA empowers people living and working in Illinois to make informed decisions about their genetic data, maintain their privacy, and protect themselves from potential harm by prohibiting employers from requesting or requiring genetic testing or genetic information as a condition of employment or during pre-employment application.

As you may know, it’s already a very competitive world in the employment arena: hard for employees to find good employers and employers to find good employees. For this reason, you might imagine the potential disadvantage if you were going up against someone of the same talent level and skillset as you -for the same job position – but the only difference in your profiles is that your family medical history could indicate you are more likely to miss work due to a disease or condition in the future.

Can you see how the employer might be tempted to speculate about your future health challenges based on this information? Or perhaps your health records contain information about the potential risks inherent to your genetic makeup (DNA) that are just potential outcomes, nothing certain. Can you see how this could be dangerous information for someone at your workplace to be aware of while making decisions?

Fortunately, GIPA prohibits employers in Illinois from inquiring about your family’s health history in this way to avoid speculation based on this information that could put you at a disadvantage in getting the job or the promotion you seek to secure.

The problem? Just because this law exists doesn’t mean that all Illinois employers are knowledgeable about it or are diligent to abide by it. If this law is violated by your employer or potential employer, knowing your rights can allow you to pursue legal action in response because the company is acting outside of the law the moment they ask about, collect, and/or retain information about your family medical history while you are an employee or potential employee.

Examples of GIPA Law Violations

During Pre-Employment Screening
Sometimes this law violation occurs during pre-employment physicals, even if done by a third-party medical facility that is conducting the screening on the company’s behalf as a condition of employment. If anyone asks you verbally or on a written form about medical conditions of your family members as a part of your screening, this may be a violation.

Did you not get hired at a job where they asked you about family medical history on a form or during a health screening test? Even if you were not offered employment for another stated reason, this kind of information about you should not be collected for their records.

During Employment – Related to Questions Asked by a Supervisor or Manager

Another way your rights could be infringed upon is if a coworker at your workplace asks you about the medical history in your family on behalf of your employer.  The bottom line regarding Illinois employers: they are not supposed to ask you, verbally or in writing, questions related to your genetic information.

What to Do If a Company Has Violated Your Right to Genetic Privacy

When this occurs, you already have a course of action you can take to defend your genetic privacy rights. The attorneys in connection with Join Class Actions have decades of experience and will provide FREE case evaluation and representation!

If your case qualifies, your potential payout will be between $2,500 and $15,000, depending on the nature of the violation.

To qualify, you must fit the following criteria:

  1. You must have been asked about FAMILY medical history by your EMPLOYER or potential employer within the past 5 years.
  2. You must have lived or worked in Illinois at the time.

* Note: Being asked about your own medical history does not qualify you. You specifically needed to be asked about your FAMILY’s medical history.

* Note: this could have occurred in a pre-employment physical (that was required by the employer) OR during employment.

If you meet the criteria, fill out a form at the below link:

Genetic Information Privacy Act violations (GIPA) – Join Class Actions

In addition to potential monetary compensation for you, taking action to defend your right to genetic information privacy also goes a long way toward helping other Illinois residents who may have been impacted by the same company violating their privacy. Other people will be thankful you stepped up to call out an infringement of rights that may affect them, too.

image of class action jen

If you would like to speak with us immediately, text Jen Malainy at
440-381-0338
or email her at classactionjen@sirillp.com. Jen has extensive experience both in the legal industry, as well as the medical industry, including working for the world-renowned hospital, Cleveland Clinic Foundation.