Pharmacogenomic Testing: Policy and Ethics

The insurance industry's curiosity about pharmacogenomics is interesting because those of us who talk about policy tried to help them understand that they can save a lot of money, which really is their only concern. However, the insurance industry is a little bit uncomfortable after the urine drug testing debacle, whereby there were some labs that did not behave particularly well, or that were fraudulent. Accordingly, the insurance industry is gun-shy about pharmacogenomics, and some of them abruptly stopped paying for almost all pharmacogenomics testing last summer. There are ethical concerns and one of the big ones has to do with patient privacy. Under GINA--The Genetic Information Non-discrimination Act, genetic testing information is not allowed to be used by insurers to deny potential enrollees health insurance, but it doesn't apply to disability insurance, long-term care insurance and such. So it's a very incomplete law and my hope is that we'll put some teeth into GINA, and thereby make Americans feel less anxious about undergoing genetic testing.

I think that at this point, primary care needs to learn a lot about pharmacogenomics. They need to find a lab that is user-friendly because, like urine drug testing labs, you can find a lot of variants among the companies doing pharmacogenomics testing as well. While shopping for a pharmacogenomics-testing company, talk to representatives and determine which one is most likely to be user-friendly. I work in pharmacogenomics research and I have been involved in it for a number of years. So I feel bad for the neophyte primary care provider who gets all this information and then says, "Now what?" So it's important to have good dialogue with the pharmacogenomics testing lab personnel and look for sample reports and make sure that if they are too complex that there is someone who will be available to explain the data and what the practical applications may be to them.