GINA – A Good First Step For Personalized Medicine

Whether you are a patient or a health care company, I think you should be happy about this. GINA is the Genetic Information Nondiscrimination Act of 2008 which was signed into law on May 21^st. It is a good step in encouraging individuals to participate in genetic testing without worrying about that information being used against them by an employer or health plan/insurer. It also bans companies from requiring genetic testing.

Based on an e-mail I got from Fulbright (a law firm where a friend practices), they offered the following definitions:

A. Genetic Information = includes the individual’s genetic tests, the genetic tests of family members of the individual, and the individual’s family medical history. Any information related to the individual’s or any family member’s participation in clinical research offering genetic services is included as is the genetic information of any fetus and embryo of an individual or family member of an individual who is pregnant. The sex or age of the individual is not considered genetic information, however.

B. Genetic Test = any analysis of DNA, RNA, chromosomes, proteins, or metabolites that detects genotypes, mutations, or chromosomal changes.

The use of genetic information (i.e., genomics) is a key step in creating personalized medicine. We know people are different and their bodies react differently to different drugs and different treatments. Some (much) of that can be attributed to their genetic make-up and likely to environmental factors.

The future holds a lot of promise once we can delivered personalized therapy that is specific to an individual. But, no one is going to get these tests if they distrust or worry about how the information is used. I have talked about this issue before when looking at companies like 23andme.