The testing kits promise to determine your chances at the "genetic lotto" for conditions ranging from celiac disease and Gaucher disease type 1, to Parkinson’s disease and Alzheimer’s. Implied in the testing is the fake science narrative that genetics alone can determine your health outcome.
The process of taking the tests is relatively simple. Customers select their choice of tests from an online selection. A saliva collection kit is then dispatched and received by the client within three to five days. After spitting in the tube provided with the kit, the client registers the barcode on the tube and mails it back to the laboratory in the included prepaid package. Lab technicians extract DNA from the sample and check it for genetic markers, and within eight weeks the client has the answer to whether or not they are genetically predisposed to a certain condition.
In the past, Americans wanting this type of information were obliged to visit a medical professional to obtain it. They were also often compelled to receive genetic counseling first, which would equip them to emotionally cope with the results. 23andMe clients will not have to undergo genetic counseling, though such services are available.
23andMe already offers another genetic testing service whereby people can determine if they carry genetic mutations for conditions like cystic fibrosis that must be present in both parents to potentially affect their future children. The FDA granted permission for that type of DIY testing back in 2015.
Genetic testing results wildly misunderstood by consumers and even doctors
These types of tests raise concerns for many.
For one thing, test results in no way guarantee that a person will or will not get a certain disease, and this can be hard for them to understand.
“If people know what they are purchasing and understand the results, then I support such tests,” said Dr. Gail P. Jarvik, the University of Washington’s head of medical genetics. “Many of these tests indicate risk of getting disease, not the certainty of getting it.” That, she added, “can be a challenging concept to communicate.”
And, as noted by CBS News, not all gene variations are equal, in that some raise the risk of a certain disease in a big way, while others have little or no effect.
"Even if doctors are given the same information about testing, they say different things with the information," said Dr. David Agus, director of USC's Westside Cancer Center. "So some doctors or companies may say it's higher risk and some lower risk with the same genetic defect. And at the same time there's no federal oversight."
These types of tests have also proven to be unreliable in the past, with some people being told incorrectly that they did not have to worry about developing a certain disease, while others were wrongly informed that they had an elevated risk profile.
There is also the fact that the medical community has no idea what effect most genetic mutations actually have; this makes it very difficult to advise people about which ones matter and what their likely effect will be.
The New York Times notes that in addition to the specific disease testing information the client has requested, 23andMe also supplies additional information like how much a person is likely to weigh. Someone presented with the information that they are genetically predisposed to being overweight is not likely to exert themselves to maintain a healthy size.
And that’s the problem with genetic testing in general: A great deal of the control over our health prospects rests in our own hands, and being told we’re genetically predisposed to certain conditions undermines the desire to live a healthy life and avoid such diseases in the first place.
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