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Direct To Consumer DNA Tests: Science Or Scam?

In a commercial for one of the companies that does home DNA tests, a young, obviously middle-class, Black man gushes over having discovered some pretty cool ancestors. “I wish I could go back 100 years and just talk with them,” he sighs wistfully. No, son, you don’t want to do that. The culture shock would be too much for you. But I do understand your sentiment.

This sentiment is the reason why in 2018, almost 30 million home DNA tests were sold; more than in all previous years combined. According to MIT Technology Review, that number is expected to reach 100 million in the next two years. Whether direct to consumer DNA tests are a science or scam depends on who you ask. While I have not found a reputable geneticist who would call the tests an outright scam, many express doubts about their validity and accuracy, and some call them outright dangerous. If you have not already, there’s a good chance that you will avail yourself of this service at some time in the reasonably near future. So, let’s look at both sides of the coin:

Pros

The skepticism of the geneticists notwithstanding, there are some benefits to the home DNA tests kits:

  • entertainment value
  • clues to ancestry
  • discovering unknown siblings
  • early warning about health issues

You have to admit, it’s a lot of fun to explore your past. Many people make it a family affair to fill out the branches on the family tree. Discovering that you are a relative of a historical figure can be pretty exciting. The discoveries made on this journey can also have a positive impact on your self-esteem. Wouldn’t you hold your head a little higher if you knew that Albert Einstein was an uncle on your mother’s side 10 times removed? No wonder you’re so smart!

And finding long lost relatives can be great, too!  I have yet to watch a reunion or first time meeting between siblings and not at least choke up. Usually I bawl. Direct to consumer home DNA test results have put extra plates on many a Thanksgiving and Christmas dinner table.

The last benefit in the above list is by far the most important. Until very recently, DTC home DNA tests were pretty much limited to tracing your roots. For the most part, they still are- with one major exception. Last year, 23andMe became the first home DNA test kit to receive FDA approval to “market genetic risk information for certain conditions.” In layman’s terms that means that the FDA has given 23andMe permission to perform tests that will tell you if you are at risk for 10 different diseases, including:

  • certain types of breast cancer
  • late-onset Alzheimer’s disease
  • Parkinson’s disease

To 23andMe’s credit, their focus has always been providing consumers with useful health-related information. CEO Anne Wojcicki says that the company is “determined to make inexpensive genetic information available without medical professionals getting in the way.” I understand what she’s saying, I’m just not crazy about the way she said it. Like any profession, the medical field has its issues. But to say that they “get in the way” of a company that does home DNA tests is, well, a bit much. The health information you can now get from 23andMe used to be available only from a doctor. It is a very good idea to get any results verified by one of the medical professionals that Ms. Wojcicki seems to hold in low regard.

Cons

On the other side of the coin, there are some significant drawbacks to direct to consumer home DNA tests. Apart from the obvious “You are not the father,” Professor Sheldon Krimsky of Tufts University says: “Make sure you are prepared for surprises, whether it’s a correct one or an incorrect one.” Drawbacks to the tests include:

  • privacy issues
  • tests can impact people who never purchased a test
  • false positive rate can be as high as 40 percent

Yep. That’s right. Up to four out of every 10 of them is just flat out wrong. That’s pretty high. And of the 60 percent or so that are correct, geneticist Adam Rutherford doesn’t have much faith in them: “Humankind is closely related and DNA will tell you little about your culture, history and identity.”

But there’s a lot more to be concerned about here than whether Queen Elizabeth was your great-great-great- great aunt. Like do you really have breast cancer. Or are you really going to get Parkinson’s disease. False negatives can have serious consequences as well. A big one is giving you a false sense of security. Since the rest of the big boys are surely going to want to get a piece of 23andMe’s “testing for health markers” pie, We can only expect the problem to get worse.

Another potential hazard of these tests is finding out information that you really didn’t want to know. In their privacy 'You are who?!'statement, Ancestry.com, who bills themselves as “the world’s largest online family history resource,” says in their privacy statement: “Once discoveries are made, we can’t undo them.” You can’t unknow that your mother is actually your grandmother, and your sister is actually your mother. It happened. Viral Thread’s advice: “Play it safe and leave the past in the past.”

Buyer Beware

If you are thinking about unraveling your DNA, your first consideration should be: What do you want to get out of the test? The answer to this question will depend on if you are interested in genealogy and genetics or present and future health risks. According to Tufts University, there are about 40 “commercial” direct to consumer home DNA testing companies. Ancestry and 23andMe are consistently ranked at the top of the list. So far, 23andMe is the only one that has FDA permission to look for health problems. There are other companies out there that can provide this information, but they are run by the medical professionals that Wojcicki seems to have issues with. According to Consumer Advocates, the top five are:

  1. Ancestry DNA
  2. My Heritage
  3. 23andMe
  4. VitaGene
  5. Orig3n

This doesn’t necessarily mean that they are the best five, but they are certainly the most popular. It is difficult to find an objective rating of the companies, so although they are not completely objective, I’m going to follow Consumer Advocate’s lead. I guess the best one for you depends on what you want to get out of the test.  According to the Federal Trade Commission, there are some questions you should keep in mind when making your decision on which company to choose:

  • who own the DNA?
  • who gets to see the information (without your name attached)?
  • how is identifyable data used?
  • can you opt out of giving genetic information to research partners?
  • can you wipe the information after the test?

Lets Talk Prices

Direct to consumer home DNA test kits run pretty much the same. Most of them have a basic kit and a premium kit. The price range is $49.95 to $99.95 with a few exceptions here and there. The Health and Ancestry kit from 23andMe clocks in at $199. Most of the companies offer online deals from time to time. There are less popular companies that offer better deals and in this particular industry, you don’t necessarily “get what you pay for.” By that I mean just because it cost more, doesn’t mean it’s better.

Be “Verwy, Verwy Careful”

If I may elaborate on Professor Kimsky’s admonition; Be sure to prepare yourself for what you might find out. The news can be just as bad as it is good. Think about what you do want to find out and weigh it against the possibility of stumbling upon something that you don’t want to find out.

And let me reiterate: If you purchase a kit for health information, verify the results with a medical professional. Home DNA testing is by no means an exact science at this point. Even the tests for your roots should not be accepted without question. Family History Daily encourages us to do our homework: “While your results may certainly contain truths, accepting your ancestry report without additional interpretation will often lead you to confusion and inaccurate assumptions about your family’s history.” 

C.al Jones

2 Comments

  1. I really enjoyed reading DNA Tests. You hit on some very good points throughout the entire article. You provide a great source of information. Keep up the good work man.

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