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Pre-testing discussion topics: GINA

Pre-test communication is key to helping patients understand why PGx testing is being conducted, what types of results to expect, and how those results will influence care. One important talking-point is the risks of testing. Although the risks of testing are minimal, because of the molecular basis of testing, many patients may be concerned about genetic discrimination. However, federal legislature was passed in 2008 to protect patients from many types of genetic discrimination. The Genetic Information Nondiscrimination Act of 2008, often referred to as GINA, prohibits health insurers and employers from discriminating against individuals based on genetic information.

Title I of GINA addresses health insurers and group health plans and states that they may not adjust premiums or contribution amounts for the group based on genetic information of its members. Title II of GINA states that it is unlawful for an employer to refuse to hire or terminate an employee because of genetic information or to limit employee opportunities because of genetic information. Further, it is unlawful for employees or insurers to request or require an individual’s genetic information. These rules also apply to employment agencies,  labor organizations, and training programs. Of note, GINA does not apply to entities such as long-term care coverage, life insurance, or the military.

GINA is an important pre-testing talking point as many patients are not familiar with the law and still express concerns about insurance discrimination (Dorsey et al, 2013; Allain et al, 2012). In fact, less than half of surveyed family physicians have knowledge of GINA (Laedtke et al, 2012). Therefore, when discussing the risks and benefits of PGx testing, community pharmacists should be prepared to discuss GINA, its protections and limitations

If interested, you may read the Genetic Information Nondiscrimination Act in its entirety here.

We will continue to post topics for pre-test discussion. You may also feel free to read our publication “Delivering pharmacogenetic testing in a primary care setting” which reviews these points.