It was important to me to get some basic genetic data about my partner and myself before we started trying to have kids. I wanted to know if either of us were carriers for any particularly bad genetic conditions (or worse if both of us were carriers for the same disease). Having this info wouldn’t stop us from wanting to have kids, but the information can be informative. The data would let us know if we needed to seek more testing so we could make responsible reproductive decisions according to our beliefs and value systems. Since I don’t have any risk factors (under 35, no genetic diseases myself or in my family) I’m not high risk enough to justify getting the expensive medical grade tests, and my insurance won’t pay for it. 23and me was a great option for me to get this information.
I knew from the start that 23andme was for information purposes only. Of course it is not a substitute for medical grade tests or for regular family history based genetic prenatal screening. I knew that I’d need to follow up with medical grade tests if anything concerning came up in my 23andme data. For example, my results showed that I may be sensitive to warfarin, meaning I may need a smaller dose. If I ever need warfarin, I won’t take less than prescribed on my own, but I will ask my doctor to check me with a medical grade test so I can get the right dose.
Thankfully our results didn’t show that we are both carriers for any of the diseases that were tested by 23andme, and this information agrees with our family history information. This allowed us to be more comfortable with our doctors’ decision to not prescribe additional genetic testing. If we had found concerning information, it may have helped us justify to the doctors and insurance that we did need additional testing. Now, as a loss mom, having this information is even more important to me, especially since we weren’t able to get genetic information from Ada, our stillborn daughter.
Whys am I talking about this?
23andme is having some issues with the FDA because some people have interpreted 23andme’s claims as being too close to unverified medical claims. I agree that 23andme came too close to and may even have crossed that line and I’m glad they are working with the FDA now to solve those issues. It may have been clear to me that the results are for information purposes only but I know that I’m not a typical customer (since I have a doctorate in genetics). It would be great if the limitations of the test were made even more clear so people know what they are buying – although I don’t think 23andme was being dishonest about this to start with. It seems, however, that some people do think that 23andme was being dishonest to start with, at least according to the article DNA testing is not why 23andme is in trouble, that describes a class action lawsuit against the company.
For me, 23andme data was an important educational tool that helped me to get more information than I would have had without it. Taking this option away (through whatever means, banning or bankrupting or other) from me as a prospective parent would be a major loss for the reasons I described above. Maybe 23andme needs bigger disclaimers to emphasize that it is not a substitute for medical diagnosis and that people should follow up with their health care professionals (although I thought that was already evident) but I hope the class action suit doesn’t destroy a company providing such a useful service just to make some bucks for a few people. That would be a major blow not just to loss parents but to everyone who’s interested in learning more about themselves.
I just downloaded my full dataset as well as a PDF printout of my health report. Just in case….