In my last blog, I wrote about the genetic discrimination that occurred in my family in 1990 before GINA, Genetic Information Nondiscrimination Act, was passed. GINA is an act to prohibit discrimination on the basis of genetic information with respect to health insurance and employment.
Example: Question #3: What is genetic information?
Genetic information means information about an individual’s genetic tests, the genetic tests of family members of the individual, the manifestation of a disease or disorder in family members of the individual or any request for or receipt of genetic services, or participation in clinical research that includes genetic services by the individual or a family member of the individual. The term genetic information includes, with respect to a pregnant woman (or a family member of a pregnant woman) genetic information about the fetus and with respect to an individual using assisted reproductive technology, genetic information about the embryo. Genetic information does not include information about the sex or age of any individual.
It would be 18 years before GINA became a law, and in that time, I’m sure, many Huntington’s disease (HD) families also suffered discrimination because of HD being in their family.
We Can Never Lose HOPE……