Can you talk about the FDA approval side of things?
I’ll start by saying that I am not a doctor. However I grew up in a family of doctors, many of my parent’s friends are doctors, my husband is a doctor and so are many of our family friends. Just keep all this in mind as a caveat.
My husband’s position is that we as patients should not have access to our detailed medical records, if only for the risk of wanting to interpret it all by asking Dr Google. And while I agree that the lay person’s attempt at diagnosing themselves with something usually makes matters worse and is a great source of anxiety, I think his opinion is heavily biased by his line of work. So I disagree.
The problem often lies within the healthcare system, where GPs see so many patients they can’t possibly form a good long term relationship with them and get to know them better. Such a relationship would facilitate better communication between patient and GP, and subsequently would encourage the GP to further educate their patient, not just treat the visit as a one of transaction.
Now… to get to your question about 23andme.
Doing the 23andme genetic test has given me so much info that I couldn’t have gotten it elsewhere. Not that it doesn’t exist, but our healthcare system doesn’t do this kind of tests routinely, either because it doesn’t see the need, or it has no funds. Doesn’t matter really, I got them on my own. The following is thanks to me spitting in a tube:
- I got to be introduced to new family members, which was a positive thing in my life
- because I also learned about some of my genetic medical predispositions, I now have a renewed perspective on the medical field and the overall healthcare system. I now know so much about diseases that are in part genetically determined, that I had previously no idea about. Doing the test confirmed some and also told me I actually don’t cary any genes that determine other fatal conditions. It made me think hard about how so much of me living my life is down to the genetic lottery - I’m tall and fit, my eyes are green, my hair is dark and wavy, I don’t have a monobrow (yes!) and my ear wax is of average liquid consistency
- knowing that all those things written down in my report are NOT a diagnosis, being relatively well educated, and also having my husband near to ask whenever I had a question, meant I neither got scared nor reassured about my results. So in a sense, knowing all this didn’t change much in my anxiety levels, it just gave me a bit more knowledge about myself.
Does 23andme have any room for improvement? Absolutely. Since they don’t make any grand promises, or give any treatment schemes, maybe the data layout in their reports could be improved. This is difficult to do on such a large scale, as they can’t possibly draw the same or even similar conclusion for all their customers. But what they can do, is work on how they present their data. They could have a podcast, or a course where they educate people on statistics and probabilities and genetic predispositions, and what genes do and how they get expressed. Perhaps more disclaimers are needed, like “no, this doesn’t mean you’ll get cancer next year, but nonetheless, eat some blueberries and go outside for a walk”.
As we are constantly bombarded with conflicting information - eggs are bad, no eggs are good, fat is bad, no wait it’s actually sugar - and it always up to us to make “informed” decisions about our health, it’s no surprise we often fail and make the wrong decision. Companies like 23andme could take it upon themselves and empower lay people in this respect. Since governments don’t seem too bothered and social media is full of fake news.
I’m not at all mad about 23andme. It’s a fantastic tool which gives you information, upon which you ask questions and see your physician for answers. When is that ever a bad thing? Oh yeah, when resources are scarce, that’s when. But as it is it only makes us more aware of the things we cannot change about our biology, and nudges us in the direction of making changes in our lifestyle instead. Don’t know what the FDA’s role is in all this, as ultimately it’s up to us to take ownership of our bodies and of our lives, but we need a healthy system in which we are afforded the possibility of doing just that.