Me, submitting a sample of my spit for a DNA test. I didn’t have to submit new saliva to get the updated results.Hollis JohnsonBack 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:
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.
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.
