What I quickly found out is that gene testing is not like standard lab tests. The results don't automatically tell us anything. There's no range to compare your reading to. What I found is that it's best for telling us which lab tests to get. The results are basically a map of your health, and navigating the map can show us what parts of my body's process may not be working correctly, thus pointing us in the direction of specific lab tests to confirm how well that part of the body's process is working. Confusing? Yes, at first.
When I first got my results from 23andMe.com, I expected the experience to come down to either "you have a MTHFR mutation" or "you don't have a MTHFR mutation." I did learn which one is the case, but that's hardly scratching the surface of what I can learn from my results. And that's just the problem. I want to learn as much as possible from my results, but I'm not equipped to study the results.
The problem with the results is that it's information overload. I was essentially handed a textbook about me, but I can't read it. 23andme.com cannot offer interpretation services, they can only give me the "raw data." They now offer certain health reports (what eye color do you have, how well you metabolize caffeine, etc) but they're not that helpful (I will say more about this at the end of the post). So I uploaded my results into a free basic interpretation program on GeneticGenie.Org (they ask for a suggested donation.) This is what Genetic Genie told me (click to enlarge it):
You automatically want to think that red means "bad," yellow means "look into this," and green means "all good." That's not the case. Genes are broken down into SNPs, and each SNP has two parts, one part from each parent. Red simply means that both of my parents gave me a mutated form of this SNP, so both sides are mutated (homozygous.) Yellow means that one parent gave me a mutated part and the other parent gave me a normal part (heterozygous.) Green means that both parents gave me normal parts. It's possible for a gene to have some mutated SNPs and normal SNPs. All of this is beyond me - I'm not a biologist. I just need to know the terms in order to do the research. You might be thinking "red means both parts are mutated, therefore that's bad, right?" Maybe. Just because an SNP is mutated does not mean it's causing problems in the body. Red means it has the highest chance of causing problems, yellow means a moderate chance of causing problems, and green means lowest chance of causing problems.
Basically, red markers tell me to look into what the normal function of the gene is to find out what the gene regulates in the body, and then order lab tests of what the gene regulates. Abnormal tests will tell me if the mutations are causing problems or not. Obviously it's more complicated than that, but this is the basic take-a-way.
So, my GeneticGenie.Org results tell me I have no reason to worry about MTHFR, because my SNPs are not mutated. But I couldn't help being worried about the homozygous SNPs, and wanting to understand what those SNPs do launched me into researching beyond MTHFR. GeneticGenie's results were not enough for me. The site only interprets these core genes, and there are thousands more. What I didn't understand in the beginning was that the vast majority of gene results will not matter. It wasn't until I read this interview with Dr. Ben Lynch (the MTHFR expert) that I understood that only a few gene mutations are worth worrying about.
Even though Dr. Lynch explains that most gene mutations don't matter because only the core genes cause major health issues, I still found it very worth while to dig deeper by uploading my raw data into Livewello.com. The basic service costs $20, but that's cheap for what you get. After that, you can pay a monthly subscription to get additional reports (new reports come out each month) about your health based on your results. Livewello interprets all the SNPs that 23andme.com tests, which is overwhelming. Looking through my results lead me down rabbit trail after rabbit trail, stressed me out, and exhausted me. If you choose to get the testing done, I highly recommend livewello, but I DO NOT recommend stressing over the results. Don't get overwhelmed. Take it in slowly, and then let most of it go. Seeing the livewello results might make you feel like you're dying. You'll scroll through a sea of red and yellow, ignoring the green, and it will worry you. STOP. If livewello's results are scaring you, you're using the tool wrong. Remember: it only shows you a map of your body, where red markers indicate that there could potentially be a problem, but it's not guarantee of a problem.
The best part about livewello is that you can click on an SNP or Gene and it will bring you to a page with all the current scientific data about it. It will link you to scientific studies and explain possible health conditions associated with the SNP or gene. It also has a community forum, where people can discuss their experience with each individual gene or SNP. Again, access to this information can be scary and overwhelming, but you're not dying.
You're not dying. The results simply tell you how your body works. It's a tool to help you understand how to operate your unique body with its specific set of conditions. There's no prognosis associated with a homozygous gene!Okay, now that we're absolutely clear on that point (because, again, you can go down rabbit trail after rabbit trail from fear and worry,) I'll show you sections of my livewello results. I can't show you all the results because there are too many!
This is a section of Livewello's report:
This is another section of their main report:
The greatest part and greatest curse of Livewello, in my opinion, is that anyone is able to create a specific report. I can find a report that will show me all my genes associated with a specific condition, such as Multiple Chemical Sensitivity, and see how many of my genes that are correlated with that condition are mutated. The problem is, what if the creator is an amateur and missed some genes? I typically only look at reports made by physicians or based on the rules by a gene expert (you might see something like "Yasko's Detox List" based on Dr. Amy Yasko's research, a leading expert in the field.) And once again, I NEED to stress this point: Just because you have a lot of mutations in your report does NOT necessarily mean you have the condition or will get the condition. It only means you should go get some lab tests.
This is an example of their heath report. They tell you about how you'll react to many drugs, how well you tolerate caffeine and alcohol, etc. With a subscription, you'll get more of these reports each month. I personally found this section to be the least useful for me personally because I don't use prescription drugs (then again, if I'm ever in a situation where I have no option, I know to avoid Warfarin):
(In previous posts I explained how badly I reacted to Cymbalta. The reason why it made me worse, yet can be very helpful for others, might be in my genes! If I were dig through my results I might even be able to find out which genes. This is really cool stuff! I'm incredibly fascinated by this kind of information, and I love all the scientists working on learning more and more about genes.)
Another interpretation site that I liked worked a little differently: athletigen.com. It's free. What it told me is interesting. It's most helpful for people who want to learn how to work out best. I learned that I'm not designed for long runs, but I can power sprint short distances and lift weights effectively. Truthfully, I already knew this about myself, but this is just confirmation. When someone asks me to train for a half marathon with them, I can show them these results and say, "nope, I'm not built for it - not interested." ;)
There are other interpretation service sites, such as promethease.com. It's $5 and it tells you health reports (how likely you are to develop certain diseases, etc.) I have not used it.
I mentioned that I would say more about 23andMe.com's new health reports. While the majority of this feature is only interesting and not very helpful, there is one aspect that some people could find very useful. You can pay doctors quite a bit of money to test to see if you're a carrier of a certain disease or health condition, or you can pay $200 for gene testing and get your carrier status with the results. I am very relieved to find that I'm not a carrier of any of the conditions they test for:
In conclusion...
23andMe.com testing can be very helpful for anyone, whether you're looking for ancestry information (which is a feature I didn't get into on this review, but it's super cool), gene information, carrier status, or health condition information. My motivation was to find answers for some of my chronic health issues, and I'm very glad I did get tested because it has answered a few questions. I do, however, need to work with a genetic expert to understand my results. This is not something I've done, due to financial constraints. It's dangerous to research gene results without an expert guiding you, as it can be very scary looking and make you feel like you're dying. It's also impossible to understand the results without an expert due to how complicated they are. I've learned to limit my research, only seeking out specific answers. Sites like GeneticGenie.org and Livewello.com can help a lay person understand just enough about their results to make some decisions on lab testing, possible supplementation, dietary changes, or exercise routines.
I will write posts on specific things I've learned, so stay tuned.
No comments:
Post a Comment