23 and Me (and You): Let the Buyer Beware
Curious about genetic testing and what the results will tell you? Be sure you're comfortable with privacy issues (or lack thereof)
Let the buyer beware! That is the message for people thinking about using home kits promising personal genetic information and details in exchange for something as simple as a saliva sample. The firm 23andMe is the latest company looking to become a household name — and the U.S. Food and Drug Administration (FDA) recently granted it authorization to market genetic reports on personal risk for certain diseases.
The authorization includes reports on genetic risk for 10 conditions, including late-onset Alzheimer’s disease, Parkinson’s disease, and harmful blood clots, among others.
“I think people are not taking into account what to do with all of this information they receive from these tests,” Cheryl Thamaravelil, a family medicine doctor in Denton, Texas, told LifeZette.
A lot of these home medical tests, this physician noted, appeal to our curiosity about our past, our current state of health, and any possible future diseases that may befall us in our lives. Having said that, a warning: “Even though we are curious, sometimes having more knowledge about certain things does not mean it will lead to happier lives,” she noted. “For example, if we are more prone to certain diseases by being carriers of certain genes, then sometimes we may find ourselves worrying about things that could possibly happen to us.”
There is a difference if someone is predisposed to something, Thamaravelil noted, versus whether it will actually happen to them. “So I feel that people may receive some useful information, but more than likely they will receive information that will confuse and alarm them more.”
Another professional shares several concerns about companies such as 23andMe. “One is what do people know when they’re doing this? How well informed are they about the information they’ll get back and how it may or may not impact them for the rest of their life?” commented Twila Brase, president and co-founder of Citizens’ Council for Health Freedom in St. Paul, Minnesota, and a registered nurse. “Another concern has to do just with genetic privacy. Do people realize that once they send this in, the company then has their genetic information? It [becomes] a matter of: ‘Will they store it? And how much could they use it beyond the scope of tests that people thought were being done?'”
In terms of services, 23andMe provides an “ancestry service” and a health-plus-ancestry service, for $99 and $199 respectively.
“Our home-based saliva collection kit is all you need to send your DNA to the lab,” says 23andMe on its website. “We have made the process as simple as possible.”
But simple or not, people do tend to have questions about the process. That fact prompted a sort of “frequently asked questions” article in STAT News by science writer Sharon Begley. Among the questions Begley sought to answer: Will the test tell people if they’re doomed to get a terrible disorder?
“Knowing you may be a carrier of certain diseases may lead to a needless sense of panic in your life.”
The short answer is “no.” Begley said the tests may work better for some ethnic groups than for others. And while it may not be on the same price level, Begley says 23andMe is not the only company out there doing this kind of testing.
Is Dr. Thamaravelil concerned about DNA tests such as 23andMe?
“I do see some positive aspect with people being able to connect with lost relatives, but I feel that the negative side can outweigh the positive,” said Thamaravelil. “I am concerned with people getting too much information without the help of a genetic counselor or medical professional to help decipher what all of this information means.”
The 23andMe company does not require a medical professional to be present when someone takes a sample. That is part of the appeal — 23andMe explains that people need simply to order, spit, send off their kit, and wait patiently for six to eight weeks for their information. That time frame may seem like an eternity for people concerned about their health and well-being. And that’s why Thamaravelil urges caution.
“It is not really necessary to know all about what genes each of us has, because sometimes those diseases may never affect us in our lifetimes,” she explained. “Knowing you may be a carrier of certain diseases may lead to a needless sense of panic in your life.”
Bottom line: While there are many known diseases today, Thamaravelil does not feel we should worry we will get every one of them. “This information should be evaluated in more of a formal context with a genetic counselor or medical professional to see if it will really even affect you in your life,” she told LifeZette.
Founded in 2006, the California-based 23andMe has more than one million customers worldwide, and over 80 percent of those folks have consented to participate in research. The reported mission of the company is to help people access, understand, and benefit from the human genome.
Referring to the FDA’s newly granted authorization, 23andMe CEO and co-founder Anne Wojcicki considers it an important moment for people who want to know their genetic health risks and be more proactive about their health.
“The FDA has embraced innovation and has empowered individuals by authorizing direct access to this information,” said Wojcicki in a press release. “It is a significant step forward for 23andMe and for the adoption of personal genetics.”
Chris Woodward is a reporter for American Family News and OneNewsNow.com. Based in Mississippi, he is also a contributor to OneMillionDads.com and EngageMagazine.net.