The Genetic Information Non-Discrimination Act (GINA), also known by the bill number H.R. 493, is meant to prohibit health insurance companies and employers from discriminating against individuals based on their or their family’s genetic information. This legislation is vitally important because it will directly affect the HD community. Without federal legislation like the GINA, health insurance companies have the option to not insure, or charge increased rates to people who know that they have the HD allele, or have a family history . Employers can use information about an individual’s predisposition to or family history of HD to make decisions on whether to hire them or how to cover their insurance. All of these situations may force many HD-afflicted families into a situation where they must pay for costly, extensive health care for their loved ones that they may not be able to afford.
Many individuals may choose to not undergo a genetic test for the presence of the HD allele out of fear that they or their family members will be discriminated against. With the protection of the GINA, they can elect to get tested without the risk of these problems. This protection is essential for the health of HD patients and family members as genetic testing can greatly improve their quality of life. If a genetic test identifies a person with the HD allele they can seek early treatment and therapy, and make many lifestyle changes that may delay the onset of HD making the course of the disease much less severe.
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