Genetic Information Nondiscrimination Act of 2008

A nearly unanimous House (414-1) and unanimous Senate (95-0) have sent the Genetic Information Nondiscrimination Act of 2008 (GINA) to President Bush, who has promised to sign the bill into law.  Can you remember the last time anything passed into law with such uniform support?

The legal protections provided by GINA are an important step in improving early identification and intervention for children with disabilities.  Previously, if a parent wanted to have their child screened for a genetic condition or predisposition, they had to worry about how the results might affect their insurance or even their employment.   GINA addresses these concerns by prohibiting discrimination based on genetic information.  Genetic information not only includes the individual's own test results, but also test results of other family members AND the "manifestation of a disease or disorder in family members of such individuals."  

This last part of the definition is particularly significant for people who have siblings or extended family with genetic conditions--it means health insurance companies can't deny you coverage or increase your rates because you have a family member with an inheritable disability whether its a sibling with autism, an aunt with schizophrenia, or a parent with Huntington's disease.  But, there is an exception to this new prohibition.  It does not prevent an insurer from raising the rates of a policy that covers the individuals with a disability.  So if your child has a disability, the family's health insurance rate can still increase--at least if you purchase health insurance on the individual market rather than getting it through your employer.

In any case, concerns about the genetic test results of a child affecting insurance and employment of parents are largely eliminated by the passage of GINA.