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Genetic Information Nondiscrimination Act (GINA)

The Genetic Information Nondiscrimination Act (GINA) was signed in 2008. The GINA protects Americans from being discriminated on the basis of differences in their DNA which may affect their health.

 

What is genetic discrimination?

Genetic discrimination takes place when people are treated differently because they have a gene mutation that causes or increases the risk of an inherited disorder. People who undergo genetic testing may be at risk for such discrimination. For instance, a health insurer may refuse to give coverage to a woman who has a DNA difference that raises her odds of getting breast cancer. Employers may use DNA information to decide whether to hire or fire workers.

“Advances in medical science are bringing us closer toward understanding the genetic underpinnings of disease, which could pave the way for new treatments or therapies. But a growing number of experts fear this progress could have serious unintended consequences for the public, allowing insurers and employers to use that information to deny coverage and benefits,” writes health columnist Carly Weeks.

Fear of discrimination may discourage individuals from making decisions and choices, which may be in their best interest. For instance, a father may not undergo genetic testing for fear of consequences to his career or the loss of insurance for his family, despite the knowledge that early therapy could improve his health and longevity.

The Genetic Information Nondiscrimination Act is a Necessity

The GINA is a piece of federal legislation that protects Americans from being treated unfairly because of differences in their DNA that may affect their health. The Act prevents discrimination from health insurers and employers. It was a long-awaited law, which had been debated in Congress for 13 years.

Protection from genetic discrimination is necessary for the following major reasons:

  • Genetic discrimination is real and growing
  • Genetic discrimination is unjust
  • Genetic discrimination is a public concern
  • Fear of genetic discrimination prevents positive uses of genetic information

Federal nondiscrimination legislation was proposed as a solution to actual cases of genetic discrimination as well as to prevent fears of potential genetic discrimination, which was seen as a major barrier to participation in testing and clinical trials. On the state level, legislatures responded to concerns by providing various levels of protection. The Genetic Information Nondiscrimination Act (GINA) provides a federal floor for protection.

Nondiscrimination in Health Insurance & Employment

GINA covers genetic information of an individual and the genetic information of family members (e.g. in determining family health history of disease). GINA does not cover an individual’s manifested disease or condition – a condition from which an individual is experiencing symptoms, being treated for, or that has been diagnosed.

Title I of the GINA covers genetic nondiscrimination in health insurance. It outlines unlawful practices for health insurers in the use of genetic information. GINA prohibits the following:

  • Health insurers are not permitted to require individuals to provide their genetic information or that of a family member for eligibility, coverage, underwriting or premium-setting decisions.
  • Health insurers may not use genetic information, either collected with intent, or incidentally, to make enrollment or coverage decisions.
  • Health insurers may not request or require that an individual or an individual’s family member undergo a genetic test.
  • In the Medicare supplemental policy and individual health insurance markets, genetic information cannot be used as a preexisting condition.

Title II of the GINA outlines unlawful activities for an employer, employment agency, labor organization, or training program in the use of genetic information. GINA prohibits the following:

  • An employer may not use genetic information in making decisions regarding hiring, promotion, terms or conditions, privileges of employment, compensation, or termination.
  • An employer, employment agency, labor organization, or training program may not limit, segregate, or classify an employee or member, or deprive that employee or member of employment opportunities, on the basis of genetic information.
  • An employer, employment agency, labor organization, or training program may not request, require, or purchase genetic information of the individual or a family member of the individual, except in rare cases.
  • An employer, employment agency, labor organization, or training program may not fail or refuse to refer an individual for employment on the basis of genetic information, nor may the agency, labor organization, or training program attempt to cause an employer to discriminate against an individual on the basis of genetic information.
  • An employer, employment agency, labor organization, or joint labor-management committee may not use genetic information in making decisions regarding admission to or employment in any program for apprenticeship or training and retraining, including on-the-job training.
  • A labor organization may not exclude or expel from membership, or otherwise discriminate against, an individual because of genetic information.

Summary

This article introduces the Genetic Information Nondiscrimination Act (GINA), which was signed in 2008. GINA protects Americans from discrimination based on differences in DNA which may affect their health. It prevents discrimination from health insurers (Title I) and employers (Title II).

CIPP Exam Preparation

In preparation for the Certified Information Privacy Professional/United States (CIPP/US) exam,  a privacy professional should be comfortable with topics related to this post, including:

  • Genetic Information Nondiscrimination Act (IV.A.c.iii.)
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