QUESTION: What are your thoughts on the 23 and me testing? This test has never been mentioned through my education, yet I see doctors in practice mention it frequently. I am actually at the hospital now with my ridiculously healthy dad who developed multiple PEs and still has a clot in his popliteal vein. I have been looking into getting the 23 and me test for him and myself, just for general health knowledge and now to see if the test has any insight on his potential clotting issues. Anywho, besides the medical aspect of the test, what do you feel about the fact that results are out there in some database? I am not quite the mastermind myself, but I could imagine someone out there my be able to use the information in ways I would not appreciate. It feels a bit odd to me and I was curious of your thoughts and how you discuss this with patients. Also, how accurate are the results and do you even recommend your patients get the test?
ANSWER: It is true that 23andMe can be used outside the HIPAA system and someone could use your data. We know they do de-identified data mining a lot which is likely fine (i.e. your parents both had DM-2 which SNP’s are present in the kids…). A lot of my patients just sign up using pseudonyms which I suppose is partly protective. I suppose the Evil Empire could jack the data and do something so I suppose it is a buyer beware situation. I still use it a lot as you get the most genetic info for the least money. Below is the protocol I send patients. You can use a commercial lab but the cost is much more (i.e. Genova) – but it is HIPAA compliant. Sadly, none of your instructors have any (or much) background in this. None of us were trained in it as it didn’t exist. It will take a decade to be really taught in schools. I suppose that keeps me busy teaching CME classes for a while.
DrA Genetic Testing Protocol for Patients:
First – Have the test kit sent and run by ’23 and Me’ (https://www.23andme.com/). This process can take 3-4 weeks.
Second – When the data is completed log on to the 23 and me site and chose Download Raw Data–and save that to a file on your computer.
Third – when data is done go to this site MTHFRSUPPORT and run the full report (http://www.mthfrsupport.com/reports-consults/order-reports/).
Fourth – When the above are done via MTHFRSUPPORT you will have to save the pdf file.
Fifth – e-mail that pdf file to us (Subject line Test Results Attached) at least 4-5 days prior to the appointment.
