Genetic Testing Law

Genetic information is among the most intimate of personal information. For many people, the desire to protect genetic information arises from concerns about what others might do with genetic information.  For example, may an employer demand genetic information and use it to deny employment, or a promotion, or limit access to other work benefits? Can a health insurance company use genetic information to refuse to offer coverage or to require higher premiums or contribution amounts? 

Congress addressed these concerns in 2008 by passing the Genetic Information Nondiscrimination Act, known as GINA.  Under GINA, employers may not use personal genetic information in hiring, firing, job assignments or promotions.  Employers may not share genetic information about an employee, retaliate against employees who assert their GINA rights, or discriminate against an employee based on genetic information.  In addition, an employer may not request, require, or purchase genetic information about an employee or their family members. Likewise, health insurers may not request or require that an individual submit to a genetic test, nor use genetic information to set eligibility requirements or to establish premium or contribution amounts.

Prior to the passage of GINA, many state legislatures had created health non-discrimination laws to address employment discrimination for conditions such as sickle cell trait.  Illinois’ Genetic Information Privacy Act, known as GIPA, was amended in January 2018 to clarify that employers may not penalize an employee who does not disclose genetic information or who chooses not to participate in a program which requires disclosure of the employee’s genetic information.  GIPA requires consent to disclose genetic information and has penalties for genetic privacy violations.  GIPA also requires that employers in Illinois treat genetic testing and information consistently with federal law, including GINA, the American’s with Disabilities Act, and other laws.

As genetic testing has become more common, large databases of genetic information have been created and retained by health organizations and commercial companies.  But, genetic information databases are at risk for unauthorized uses. This happened in 2018 when a company called FamilyTreeDNA began to share the DNA information of its customers with the FBI.  In February 2019, FamilyTreeDNA notified customers that it shared their information without authorization.  In response, Congressman Bobby Rush, of the 1st District of Illinois, introduced a bill in Congress to require stronger informed consent rules and detailed notices to customers about how their genetic information will be used. 

To protect your genetic privacy ask how your information will be used, retained, and protected before you provide a genetic sample.  And, because privacy law is evolving, let your federal and state legislators know about your privacy and consumer protection concerns.