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Genetic Information Discrimination in the Workplace

More and more employers have begun to offer workplace wellness programs as part of their health benefits and perks packages. These programs provide workers with health care options and other health and wellness benefits. Some include screening for genetic disorders.

In response, concern about genetic discrimination grew among politicians and health care providers. Some states have amended their anti-discrimination laws to include genetic information.

At the federal level, the Genetic Information Nondiscrimination Act of 2008 (GINA) prohibits employment discrimination based on genetic information. Employers may not hire or fire someone based on knowledge of their genetic makeup. GINA also prevents employers from sharing this information with others.

Why Would My Employer Want My Genetic Information?

As home DNA kits became popular, employers and insurance companies began using them to screen workers. Employers claimed they could better ensure employee safety using genetic information.

For example, exposure to even low levels of carbon monoxide puts someone with the sickle-cell trait at risk of developing sickle-cell anemia. An employer who knows this could assign them to a different work area to protect their health.

But access to this information can also increase the risk of other forms of discrimination. For example, the sickle-cell trait is present in 1 out of 12 Black Americans but only 1 out of 1000 white Americans. So, changing someone's work environment based on this trait would likely lead to discrimination based on race. Federal and state laws prohibit this type of discrimination.

Genetic Information Nondiscrimination Act

GINA is a federal law that fills gaps left in other privacy and employment laws. GINA defines "genetic information" and limits when and how employers may request it. GINA protects the employee's family members and medical history as well as the employee.

According to GINA, "genetic information" includes an employee's or an employee's family member's:

  • Genetic test results
  • Family medical history with information on genetic diseases or disorders
  • Request for or receipt of genetic services

Congress enacted GINA to expand consumer protections already provided by the Health Insurance Portability and Accountability Act (HIPAA). HIPAA prevents an insurance plan from having a preexisting condition exclusion based on genetic information. GINA prohibits collecting such information for eligibility, enrollment, or underwriting purposes.

GINA doesn't cover an individual with an existing genetic disorder or a genetic-related condition. If their condition meets the legal definition of a disability, they may be covered by the Americans with Disabilities Act (ADA). Employers may not use medical information provided with a request for reasonable accommodations to search for other undisclosed conditions.

How Would My Employer Get My Genetic Information?

GINA prohibits employers from collecting employees' genetic information for any reason. Employers can't require employees to supply genetic information as part of a job-related medical examination or a fitness-for-duty exam.

But employers may offer genetic testing. This could be part of an employee wellness program or through voluntary participation in a program that requires genetic tests. Employers may also find themselves in possession of employees' genetic information:

  • Accidentally, through inadvertent disclosure
  • By voluntary disclosure through a request for Family and Medical Leave Act leave (or FMLA leave)
  • By request from law enforcement or other DNA testing facility

Harassment Based on Genetic Information

Employment decisions may not be made based on protected traits, such as:

  • Race
  • Gender
  • National origin
  • Disability

The Equal Employment Opportunity Commission (EEOC) treats harassment based on genetic information like any other type of harassment. Harassment based on genetic information might include:

  • Sharing genetic information improperly
  • Forcing a worker to join others in a group workplace wellness test

There have been few court cases involving genetic discrimination. A number of cases didn't reach the courtroom. They involved insurance companies denying coverage on the basis of genetic information. In some cases, the denial involved the individual's family members. These cases never reached court because the companies settled or reinstated the insurance when challenged by attorneys.

The cases that went to court predated GINA. They involved questions of privacy violations and testing employees without their knowledge.

In 1999, Lawrence Berkeley Laboratory was charged with pre-screening job applicants for medical conditions like sickle-cell anemia and syphilis. Unfortunately, the statute of limitations for the California privacy law had run, and the plaintiffs were barred from bringing their case.

In 2002, Burlington Northern Santa Fe Railroad was alleged to have tested some 20 workers. It was looking for an alleged genetic cause of carpal tunnel syndrome.

Since the passage of GINA and subsequent state genetic privacy laws, no other cases are known to have reached court.

GINA and Health Insurance

GINA's most significant impact so far is on employer group health insurance. Insurance companies may not use genetic information when enrolling members in group health plans or underwriting policies. They may not use genetic monitoring for any clients.

But keep in mind that GINA does not cover:

  • Life insurance
  • Disability insurance
  • Long-term care coverage

Unfortunately, these are the exact types of coverage many people with genetic health conditions are most likely to need. GINA also doesn't protect government employees or those receiving Tricare, Medicare, or Medicaid. It only applies to private employers.

The National Human Genome Research Institute monitors the effects of GINA and other laws on employment and health insurance. This agency engages in the acquisition of genetic information for research on genetic diseases.

State Legislation

Nine states have passed genetic information privacy laws similar to GINA. These laws restrict the collection and release of genetic information in the same way as GINA. California's laws expand protection to life insurance, disability, and long-term care coverage, which GINA does not cover.

Many states have some form of genetic protection laws, often enfolded into health information laws or data privacy laws. An employer's safest action is getting legal advice before offering workplace genetic tests.

Seeking Legal Help

Small businesses need the best workers they can attract. Offering special perks is one way to do that. With laws changing faster than small business owners can keep up, a business law attorney can help explain what you can and can't do.

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