Are you fascinated with what your DNA says about you? You're not alone.
MIT Technology Review found that as many people purchased tests from major brands like 23andMe and Ancestry in 2018 as in all previous years combined. Though DNA testing kit sales dipped a little in 2019 overall, 23andMe's test was a bestseller during last year's Amazon Prime Day.
We get the fascination — whether it’s where our ancestors came from or which diseases we may be at risk for, our DNA can tell us a lot. But there are also concerns.
“You have to be aware that the direct-to-consumer market is unregulated so there are many companies out there that are selling false promises,” says Jada Benn Torres, associate professor of Anthropology and director of the Genetic Anthropology and Biocultural Studies Laboratory at Vanderbilt University.
While genetic tests are now so accessible, you need to do your homework before making a purchase. Money spoke to genealogy experts about how to do just that.
What's the best DNA test for you?
So, you know you want a DNA test. But what for? There are several reasons people want to learn more about what makes them, well, them. Lawrence Brody, director of the Division of Genomics and Society at the National Human Genome Research Institute, breaks them down into three categories.
First, there are recreational purposes, like finding out more about your ancestry. This isn’t necessarily just for people who want to find their long-lost parent (although that can be a byproduct) but also for people who want to figure out where in the world their ancestors came from.
Then there is lifestyle. This can range from things like what your genetics say about what kind of perfume you should wear to how it determines what type of exercise is best for you. The science to support these kinds of tests can be pretty weak, Brody says, and be careful about companies that are using the results to sell products (like if a finding of which wine best suits your taste is followed by a discount for that wine).
The last category is health. These tests likely aren’t going to be able to tell you whether or not you have a disease, but instead whether there is a slightly increased probability you could have or will get something like diabetes, heart disease or cancer. (A small number of direct-to-consumer tests include information about genes that could reveal that you have a very high risk of disease, high enough that that a medical professional should be consulted, Brody says.)
Who else will see your data?
One of the most important questions to ask — and something nearly every expert Money interviewed brought up — is about who has access to your data. In 2018, the “Golden State killer” was arrested after law enforcement found a near-match to DNA from the crime scenes via GEDmatch, a site where people can upload DNA profiles they get from larger commercial sites like 23andMe. The near-match was a relative of the suspect, which helped detectives eventually find him. It raised questions about how DNA from these testing kits can be used.
People need to think about what will happen to their DNA after it’s tested, who owns it, how it will be stored, whether or not it will be destroyed and who has access to it, Benn Torres says.
“We’re often individualistic and we think, ‘I’ll do this test and I’ll find out things about me,'” she says. “You’re also putting information about your relatives out there.”
Read the fine print to get answers to these questions — or see if the answers aren’t available — and, if needed, make sure to ask the company before purchasing.
How sound is the science?
Before buying a test, you want to know that it’s based on strong science.
“Science is constantly evolving and companies need to keep up with that,” says Gillian Hooker, president of National Society of Genetic Counselors (NSGC). That includes disclosing the limitations of their testing. (An example of a limitation would be if there are 10 genes known to be associated with risk for developing breast cancer and the test only looks at 4 without saying anything about the other 6. Or if it looks only at genes that are associated with small increases in risk, but not the genes that are associated with high risk for developing cancer.) If you didn't know these limitations, you might be falsely reassured, Hooker says.
You want to make sure you can find that information easily, and if you can’t, ask. Benn Torres says she would shy away from companies that have this information behind a paywall, as you should know what to expect before you buy the kit.
It’s also about the comparative data that a company has, says Ripan Malhi, an anthropology professor at the University of Illinois at Urbana-Champaign. For ancestry testing, databases should have geographically diverse regions of sampling. Many of the comparative databases are very large for people of European descent, but smaller, and therefore, limited for others, Malhi says. There are companies that offer more specific databases, like African Ancestry, which looks at genetic ancestry among African descendants.
Who are the experts associated with DNA test kits?
In addition to checking out the science, you should also make sure the company’s experts are qualified, Benn Torres says. Make sure they have a degree or practical experience in genetics or bioinformatics (analyzing biological data).
And even if you get the findings you want from a company, it can be difficult to figure out what they’re telling you on your own.
“You also want to know upfront the level of support you will have from experts, if a genetic counselor will be available to speak to you individually about your results or if the company has a way to connect you with one if you have questions,” Hooker says. A genetic counselor is educated in genetics and counseling, and provides help to patients as they make decisions about their genetic health.
Access to a genetic counselor or medical geneticist would be most important if there was some aspect of diagnostic or medical testing in the mix, Brody says. And while most direct-to-consumer testing does not include these more serious tests, many companies do have genetic professional on staff and — if their FAQs do not cover the questions — customers can often email inquiries to an expert, he adds.
Ancestry offers genetic counseling to all customers who purchase its AncestryHealth product at no additional charge via its partnership with PWNHealth. It can be as quick as a submitting a question electronically, or a more in-depth one-on-one telehealth session, says Sarah South, vice president of AncestryHealth. Genetic counseling services are not included in the 23andMe testing process, but the company provides resources within its health reports to help customers get in contact with local genetic counseling services should they choose that route, says Andy Kill, communications director at 23andMe.
Often, health insurance covers the cost of a genetic counselor, according to NSGC.
How much do DNA tests cost? Are there deals?
The cost of DNA kits can vary depending on the brand and what kind of test you’re looking for, along with where and when you buy one.
Products from the testing kit giants like 23andMe and Ancestry are sold via major retailers like Amazon and Walmart, and prices are generally the same as buying directly from the DNA kit brand's website. If you're trying to save some money, it might be worth waiting for a big promotion or sales event, such as Black Friday, Cyber Monday, or Amazon Prime Day, when there are usually major discounts. If you are more interested in a product from a smaller DNA test company, or a product that does more specific kinds of testing, you might need to buy directly from the source.
Here are some sample prices, to give you an idea of what you'll pay:
23andMe charges $99 for an ancestry breakdown, and in early September it was offering 20% on the second kit (after buying the first one at regular price). At the higher end, the normal price is $199 for insights into your ancestry, traits and health. During Black Friday sales last year, however, the 23andMe Health + Ancestry kit was $99 at Walmart, or 50% off.
Ancestry normally charges $99 for AncestryDNA (including information on origins and ethnicity, DNA matches and historical and geographic insights), and $179 for AncestryHealth (including everything in the DNA offering plus things like personalized health reports and support from independent healthcare providers). Last year, you could save up to 50% on AncestryDNA by buying it on Amazon Prime Day.
Invitae and Other Gene Testing
Genetic medical testing used to cost thousands of dollars but now — depending on what type of information you are looking for — you’ll likely pay between $100 and $350, says cancer-focused genetic counselor Rachel Mador-House. Invitae, for example, offers a range of medical genetic tests, including single-gene testing for $250. And you might be able to use your flexible health spending account or even have insurance coverage in some cases, she adds.
Keep in mind that this information may have a drastic effect on you and your family’s healthcare, Mador-House says — “Invest in the test that gives you the best information and provides you with the best clinical support.”
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