The Food and Drug Administration now lets 23andMe provide reports on whether you have certain risk factors for diseases including cancer. Here's what I found.
Back in 2015, I decided to send my spit to 23andMe, the company that sells direct-to-consumer genetics tests.
The test gave me information as varied as how much DNA I share with our Neanderthal ancestors, how much caffeine I most likely consume, and whether I may have a unibrow. It also let me know whether I'm carrying certain genetic variations related to diseases that could be passed on to kids.
In April of last year, the US Food and Drug Administration told 23andMe it could start providing reports revealing whether you have certain risk factors for developing diseases including Parkinson's disease and Alzheimer's disease.
A year later, the FDA gave 23andMe clearance to tell consumers about their risk of cancer — specifically about three BRCA1 and BRCA2 gene mutations that are associated with an increased risk in breast and ovarian cancer. The test has genetic counselors and scientists concerned, because there are thousands of mutations associated with the BRCA1 and BRCA2 genes and this test screens for only three of them most commonly found in people of Ashkenazi (Eastern European) Jewish descent.
The version of the test that includes the health reports costs $199, while the ancestry test alone is $99. Here's what it was like:
I first received my 23andMe test in 2015. Because I had already submitted my sample, I didn't have to repeat the process to get my reports on health risks in 2017 or on BRCA mutations in 2018.
That meant I didn't have to resubmit a sample of my saliva, which was convenient. Spitting into the tube had taken me about five minutes the first time around.
Before I shipped my spit, I registered online. I also got to decide whether I wanted to have my DNA used to research treatments for diseases. In the spirit of science, I decided to consent and sign the form.
When I got my original report in 2015, I had 62 reports waiting for me based on my 23 pairs of chromosomes from mom and dad. The reports covered everything from family history to physical traits and genetic variants related to diseases that I could pass down to my kids.
When I logged in to my 23andMe account in 2018, I was surprised to see that the number had increased to 81 (this is including the genetic-health-risk tests I opted into).
The new reports are available only to 23andme customers who had tests done on the company's newest genotyping chip. That's the vast majority of customers who were tested by late November 2013, according to a 23andme spokesman.
Of course, I still had the basics, such as my ancestry breakdown. This time, my results were even more specific, breaking down my Scandinavian ancestry into my Norwegian heritage specifically.
Learn more about ancestry tests.
Notably, more wellness reports were available than was the case when I most recently checked. In 2015, I spent time investigating my muscle composition, which told me I wasn't a sprinter.
Now, however, there were reports about my sleeping and eating habits. When it came to the genetics behind my weight, my results weren't entirely unexpected — I had gotten the same results from another DNA test I took.
Back when I first took the test, the most controversial part was the carrier-status test, which tells me whether I carry a variant that could be passed down to my children, resulting in a genetic disease. These were the tests the FDA needed to approve. 23andMe was very thorough in its presentation here, making it clear that the tests couldn't be used to inform my own health.
But in 2017, I had access to my genetic health risks, which could tell me whether I personally had an increased risk of getting certain diseases, including Parkinson's and Alzheimer's. My heart pounding, I clicked on a link that took me to the reports. Not everyone has to get the test. If you're not ready, you can select "ask me again later," and if you really never want to see the results, you can opt out entirely.
You can also choose to opt out of just the Alzheimer's and Parkinson's reports. Because the two neurodegenerative diseases have few treatments, getting the report could cause more anxiety than necessary.
On these two, I opted to defer. I made the decision after speaking with representatives from patient groups in 2017, who clarified what the reports could tell me and what I might want to do before looking at them.
For both Parkinson's and Alzheimer's, age is a bigger risk factor than genetics. With Parkinson's, if I had a variant related to the disease, my risk of getting the disease would certainly be increased, but not by much.
Keith Fargo, the Alzheimer's Association director of scientific programs and outreach, told Business Insider in 2017 that the Alzheimer's report, which would tell me whether I had a mutation on my APOE gene, was more useful in the context of research than it was for predicting who might get the disease. And as I mentioned, I had allowed 23andMe to use my DNA for research purposes, so it was already getting put to use.
I also kept in mind my family history of one of these diseases. If I decide to view my results, I will plan on speaking with a genetic counselor before proceeding.
Another factor I noted was life insurance, something 23andMe's report brings up as well. While genetic testing can't prevent you from getting health insurance, life-insurance policies can use the information to deny your application. Since my results won't be changing, I decided it would make the most sense to wait to get the results until I get life insurance. As long as I don't know, there shouldn't be a way for life insurers to find out.
Had I decided to see my results, 23andMe would have asked once more whether I was sure. This would have spelled out what exactly the risk window would be. If I had the highest risk, I'd have a 60% chance of developing Alzheimer's by 85. Right now, roughly one-third of people over 85 have Alzheimer's.
Had I chosen to see my Alzheimer's results, they may look like this.
When I logged back in in 2018, I saw that there were now three health reports to choose from. Because I had fairly good reason to believe that I wouldn't have one of the three variants, I decided it wouldn't be a big deal to click through and see my results for that test.
When I spoke with a genetic counselor about this, she told me her bigger concern was that if someone of Scandinavian descent (like me) tested negative but did have a family history of breast and ovarian cancer, the person may not fully understand that he or she still could have a mutation, just not in the three tested. So I paid close attention to a paragraph explaining that the results of the report didn't mean my risk of cancer was reduced.
Read more about the concerns over 23andMe's cancer genetics test.
Cancer is a complex condition, and it can be caused by numerous factors — genetics being just one part of that. Should I have a mutation on BRCA1 or BRCA2 (identified by this test or elsewhere), the presence of a mutation doesn't necessarily mean I have cancer, just that the chances are higher. For example, in the US, the average woman has a 7% of chance of getting breast cancer by age 70. That escalates to 50% if the woman has a mutation to her BRCA1 or BRCA2 genes. As part of my BRCA tutorial, 23andMe explained how different factors increase cancer risk.
Further down the page on my BRCA results, there are resources for how to communicate the information to family members and physicians and how to get in touch with a genetic counselor.
Here's a resource for finding a genetic counselor.
Afterward, I checked out my other genetic-health-risk reports. My results for Alpha-1 antitrypsin deficiency and celiac disease showed up on the same page as my BRCA results. On this page, I could also revisit whether I wanted to see my Parkinson's or Alzheimer's results.
The takeaway: It was fascinating to pop back in to my account and see new reports. I feel grateful that I don't have to see my Parkinson's disease and Alzheimer's disease results, but I can still choose to check out my BRCA results — albeit with the big caveat that they're likely to be negative anyway. Either way, it was fun to check in on my Neanderthal results.
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