George there are several problems with 23andMe. First, they are practicing medicine without a license and don’t care. They are being irresponsible and care about nothing but making money.
In medicine we never give patients medical reports without also providing them with the counseling required to interpret those results. Nowhere is this more true than with genetic counseling. The average person does not have the education or the tools needed to understand the implications of genetic risk information without some guidance from a person who is well versed in this area.
Genetics is not destiny for so many different reasons. Aside from the fact that environment plays a big role in many diseases and traits, most traits are not even influenced by a single gene. Many traits and illnesses are a factor not only of the interaction between environment and a gene but the interaction between different a gene and many other genes.
I can tell you from many years of experience that if you tell someone they have a 30% increased risk of cancer X developing there is a pretty good chance that this is going to have a negative impact on their life. Even if its accurate, giving someone that sort of information without providing the appropriate counseling is completely irresponsible. Counseling needs to take place BEFORE the testing so the patient knows what to expect and can decide if this information is really something they will find helpful. People often have unrealistic expectations about what genetic testing can do for them and dont realize that they may be left with more ambiguity than they are prepared to deal with when they get the results. Counseling certainly needs to be available AFTER the testing as well so the patient can be taught how to use the information in a way that makes sense. Providing raw data without expert counsel is just plain irresponsible.
All of this assumes that the science they use to come up with their statistics and probability are accurate. There are lots of questions about this data when it comes to 23andMe which is a big reason why the FDA is going after them. They have refused to provide much of the data they use to back up the claims they are making.
Finally, and I think most importantly, much if not all of the information provided by 23andMe isn’t useful. They provide very little actionable information that will lead to improved health for the most part. If you are told you have a 25% increased risk of ovarian cancer what are you going to do with that information? There are no effective screening tests for this disease. If you are told your risk of cardiac disease is 50% higher are you gong to quit smoking, lose weight, eat better? You should have been doing those things anyway. the test results change nothing. And if you are told conversely that your risk of heart disease is 50% lower than average are you going to give yourself a pass on some of those thing? That would not be a prudent thing to do but many people would if given that information.
There are cases where genetic data can be helpful. Some genetic defects are 100% predictive and may allow you to plan for the future even if you cant change the outcome, but those situations are not common and usually involve prenatal testing and decisions about termination. BRCA testing when positive puts a woman at much greater risk of breast cancer, but before we order such a test we always have an in depth conversation with the patient about the risks, benefits and choices. Some woman who find out they are BRCA + will without reservation have a bilateral mastectomy. For them the test is useful. Others would never consider such a thing and the knowledge alone might result in never ending anxiety and depression. For them such a test could be devastating.
The bottom line is that genetic testing is not a toy and shouldn’t be treated as such but that is exactly what 23andMe is doing without any regard for the people who may be harmed.