Say Hello to GINA

GINA isn’t a new Workplace Fairness staff member, but the first piece of federal legislation protecting workers from discrimination that has come along in quite some time. GINA stands for the Genetic Information Nondiscrimination Act, which prohibits employers from discriminating against applicants and employees based on genetic tests or genetic information, and also prohibits health insurers from restricting enrollment and premium adjustments for health insurance on the basis of genetic information or genetic services. Don’t rush out to get those genetic tests just yet, however, as the employment section of the new law doesn’t go into effect for 18 months, in order to give the Equal Employment Opportunity Commission time to implement regulations, and for employers to develop policies consistent with the new law.

It’s hard to imagine a bill more bipartisan than GINA. The bill (HR 493) passed the Senate by a vote of 95-0 and the House by a margin of 414-1. (Who was that lone House dissenter? Republican presidential candidate Ron Paul, whose Congressional website claims that he “never votes for legislation unless the proposed measure is expressly authorized by the Constitution,” and that according to former Treasury Secretary William Simon, he’s the “one exception to the Gang of 535″ on Capitol Hill.” That was certainly the case this time.)

Obviously, with such widespread Congressional support, President Bush had no choice but to sign it, and he did so on May 21, 2008. (See Signing Statement.) In doing so, he noted the absence of Sen. Ted Kennedy, due to a recently diagnosed malignant brain tumor, who had been a driving force behind the bill’s passage during the decade that it was under consideration. Kennedy’s spokewoman noted, “Today, the President signed what Senator Kennedy calls the first civil rights law of the century of the life sciences.” (See Kennedy statement.)

What does GINA do?

GINA prohibits employers from discriminating against their employees on the basis of genetic information (no matter how the information was acquired) in hiring, termination, compensation, and other personnel actions such as promotions, classifications and assignments. It also prohibits employers from requiring genetic testing and from purchasing or collecting genetic information, with a few limited exceptions, such as when it is required for Family and Medical Leave Act certification and monitoring effects of hazardous workplace exposures.

GINA also prohibits disclosure of an employee’s genetic information, except under the following circumstances:

  • upon the employee’s request,
  • to an occupational or other health researcher,
  • pursuant to a court order,
  • to a government official investigating compliance with this law,
  • in connection with the employee’s compliance with the FMLA or state family and medical leave laws, or
  • to a public health agency.

When genetic information is received by the employer, it is to be maintained confidentially and disclosed to the employee only.

The health insurance provisions of GINA go into effect in one year, as opposed to 18 months for the employment-related provisions. These provisions apply to group health plans, individual plans, and Medicare supplemental plans. GINA prohibits the use of genetic information in enrollment restrictions and premium adjustments and prohibits health plans and insurers from requesting or requiring genetic testing. However, GINA doesn’t prevent genetic discrimination against people applying for life, disability, or long-term care insurance — other forms of insurance where genetic information may adversely influence a patient’s ability to obtain adequate insurance.

Why is GINA necessary?

According to the National Human Genome Research Institute,

While most Americans are optimistic about the use of genetic information to
improve health, many are concerned that genetic information may be used by
insurers to deny, limit or cancel health insurance, and by employers to
discriminate in the workplace. They are worried that some insurers may choose
not to insure people who are healthy but genetically pre-disposed to future
disease onset: such people incur more health-related costs for the insurance
company than individuals who are not predisposed. Similarly, they fear that some
employers might only employ or retain individuals who are not pre-disposed to
future disease onset, since healthy individuals are more productive.

Once GINA’s protections kick in, in late 2009, employees will feel more confident about taking genetic tests that may help predict whether they will develop certain diseases without worrying whether doing so will make them unemployable and uninsurable. With more individuals taking genetic tests, scientists will have more data allowing them to make the tests even more reliable and useful. While the misuse of genetic information may not be widespread now, with very few cases in the states that currently have antidiscrimination protections, this bill is designed to prevent genetic discrimination from ever gaining a foothold in the workplace.

As the primary House sponsor of the bill, Rep. Louise Slaughter, proclaimed, “Since no one is born with perfect genes, each one of us is a potential victim of genetic discrimination.” (See Slaughter statement.) This legislation will protect all of us, and luckily all of Congress and the President agreed. Now, if we just didn’t have to wait 18 months for it to go in effect…but we’ve already waited over 10 years.

More Information:

Coalition for Genetic Fairness
Human Genome Project
National Human Genome Research Institute, National Institute of Health genetic discrimination page

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Madeline Messa

Madeline Messa is a 3L at Syracuse University College of Law. She graduated from Penn State with a degree in journalism. With her legal research and writing for Workplace Fairness, she strives to equip people with the information they need to be their own best advocate.