What is the Genetic Information Privacy Act (GIPA)?
Illinois’ Genetic Information Privacy Act (“GIPA”) prohibits companies from requesting their employees – and even job applicants – to disclose their family medical history as a condition of employment.
GIPA’s purpose
GIPA’s main purpose is to encourage people to use genetic tests (for example, the saliva tests used by 23andme). The elected officials who introduced the law noted that genetic tests provide benefits to the health of the public. But, if people don’t use genetic tests because they’re afraid that their employers will ask that information from them in the future, then the public will not benefit from learning about their heightened risks before a disease actually develops.
In order to prevent that from happening, GIPA prohibits employers from asking their employees or potential employees about their family’s medical history.
What is family medical history?
Generally, family medical history includes information about a manifested disease or disorder in a family member of an individual.
Examples of unlawful requests include:
- Does your mother have diabetes?
- Has anyone in your family been diagnosed with cancer?
- Do you have a history of family hearing loss?
Family medical history DOES NOT include information about a manifested disease or disorder in the job applicant or employee, even if the condition is inheritable.
Examples of lawful requests include:
- Do you have diabetes?
- Have you been diagnosed with cancer?
- Do you have a history of hearing loss?
Indirect and Direct Requests
GIPA prohibits an employer from indirectly or directly requesting family history. This means that the employer cannot avoid liability by using outside medical providers to make the request. This includes pre-employment physical examinations related to the hiring process, or post-employment physicals for on-the-job injuries.
Example of a direct request: An employer may be liable for directly requesting family history at a pre-employment physical conducted on-site by the employer’s own staff.
Example of an indirect request: An employer may be liable for indirectly requesting family history at a physical conducted by an outside medical provider for a workers’ compensation claim.
5 Year Deadline
GIPA has a five-year statute of limitations, meaning that a lawsuit must be filed within 5 years of an unlawful request.
What is the remedy for an unlawful request?
The legislature understood that it is hard to quantify the damage for an invasion of genetic privacy. Thus, they included statutory damages, meaning an individual who prevails is entitled to $2,500 for a negligent violation or $15,000 for an intentional violation, plus attorneys’ fees, costs, and injunctive relief.
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