What Is the Genetic Information Nondiscrimination Act?

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Posted by: David Garcia April 08, 2024

The Genetic Information Nondiscrimination Act of 2008, also known as GINA, is a federal statute that prevents employers and health insurance companies from discriminating against someone on the basis of their genetic information. 

However, genetic information in this context isn’t just limited to an individual’s DNA – GINA also covers genetic test results of individuals and their family members, including fetal test results, genetic counseling, or family histories of disorders or diseases. 

Employers cannot use any of these factors to make decisions about hiring, firing, or job duties. GINA also limits an employer’s ability to request an employee’s genetic information and lists their responsibilities in safeguarding it.

What Is the Purpose of the Genetic Information Nondiscrimination Act (GINA)?

GINA serves many purposes – broadly, it exists to prevent discrimination and protect past, current, and future research. Genomic research has come to the forefront of medical science and treatment over the past two decades, thanks largely to the Human Genome Project. 

The Human Genome Project (HGP) was a large-scale research endeavor in the early 2000s that set out to understand all parts of human DNA. This information has been the basis of countless modern scientific and medical breakthroughs, including screenings for congenital conditions and risk factors for diseases like cancer. 

The success of the HGP and other similar research depends on volunteer-given DNA. Likewise, genetically driven treatments and screenings collect very personal information – literally a person’s unique genetic profile. GINA exists to protect people from misuse of this data by employers and health insurance companies. These protections allow research to move forward and individuals to continue accessing genetically-informed medical treatments without fear of their information being used against them. 

What Does Gina Prohibit?

Genetic information can be a powerful tool for people to take better control of their health. It can also be used to predict the likelihood of developing future health problems and even predict the likelihood of passing on health issues to future children. However, many people worry that this deeply personal information could be used against them by other parties. 

GINA protects access to genetic testing, counseling, and other related services by prohibiting health insurers, employers, and other entities covered under GINA Title II from using this information to make insurance or work decisions. It also prohibits these entities from requiring, intentionally obtaining, or requesting genetic information – including family health history – from individuals and their families.

In practice, this means health insurers can’t use genetic information – including genetic propensity to developing disease or disease revealed by genetic testing – as factors in the cost, benefits, eligibility, or coverage of an insurance plan. This also applies to the genetic information of that person’s family, such as family history or DNA test results. 

When it comes to the workforce, employers are also very limited in their access to genomic information. There are a few narrow exceptions to this rule. For example, an employer may request this information if it is related to a reasonable request for accommodation by the individual. However, even in these few cases of exceptions, GINA also details an employer’s responsibilities to responsibly use and safeguard any genomic information. 

By safeguarding the privacy of individuals, GINA creates conditions where people feel safe to access critical genetic services and continue contributing to important genomic research that can benefit current and future generations. 

Under What Circumstances Can Employers Legally Obtain Genetic Information?

While employers are generally restricted by GINA, there are a few exceptions. Firstly, GINA does not cover accidental disclosures, such as a manager overhearing a discussion about an illness in the family. Proof of family medical history may also be required if an employee requests to use FMLA to care for a family member. 

There are a few instances where employers may acquire this information through voluntary programs, such as voluntary employee participation in health programs offered by the employer. Certain workplaces that use toxic substances may also offer monitoring for biological effects that employees may choose to participate in. 

Finally, employers can acquire this information through publicly or commercially available sources like social media or newspapers, so long as the discovery is inadvertent and the employer has not been searching with the intent to find this information. Employers should also not purposely access sources where they are likely to find genetic information, such as online forums about genetic diseases. 

How To Report a Violation

To report a work-related GINA violation, contact the Equal Employment Opportunity Commission. It is illegal for employers to retaliate against employees for filing a complaint about a GINA violation. 

To report health insurance-related GINA violations, contact your state’s health insurance commissioner. 

Frequently Asked Questions

What Is the Gina Law for Dummies?

GINA, or the Genetic Information Nondiscrimination Act, is a law that prohibits employers and health insurers from using an individual’s genomic information or history to make decisions about them. This includes employment decisions such as hiring, firing, or switching duties. GINA also applies to individuals in a person’s family, including embryos.

Final Thoughts

GINA protects individuals from genetic-based discrimination in health insurance and in the workplace. ScoutLogic can help ensure GINA-compliant background check services so employers don’t have to worry about inadvertent violations.

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