You may have seen the news last week that the FDA gave genetic testing company 23andMe approval to sell direct-to-consumer kits that measure your genetic predisposition for up to ten diseases—including Parkinson's, Alzheimer's, and celiac. So let's say you decide to give it a go: You order a kit, spit into a test tube, and wait. Easy peasy. A few weeks later, you sign in and scroll through your results, skipping directly to Alzheimer's, the one you're most worried about.
That's when you see a worrisome little graphic, shaped like a pill. "Variant detected," it reads. Above it: "You have two copies of the e4 variant we tested." You keep scrolling. "You may have an increased risk..." Uh-oh. A chill creeps up your spine.
"Studies estimate that an average man of European descent with this result has a 28% chance of developing late-onset Alzheimer's disease by age 75, and a 51% chance by age 85." Finally, you reach the section on treatment: "There is currently no known prevention or cure for Alzheimer's disease."
Now what? Do you tell your partner they might have to be your de facto caretaker one day? While Nicholas Sparks can spin an Alzheimer's diagnosis into a romance novel, the reality is much different. Should you be scared? Should you start researching treatments? What the hell does a 28 percent chance even mean? Isn't that also a 72 percent chance of not developing late-onset Alzheimer's by your 75th birthday?
Questions like these—and the panic that can ensue when people dwell on them—are among the reasons 23andMe customers must opt-in to receive any genetic health reports, as well as go through an additional opt-in process for Alzheimer's and Parkinson's. The company has received clearance for ten such reports, but currently offers four in addition to testing for carrier status for Gaucher's disease.
But when it comes to diseases with no real viable treatment options—such as Alzheimer's—or with more limited options like Parkinson's, it's another matter entirely. Just wrapping your head around what "genetic risk" actually means can be difficult. As 23andMe's own site mentions, there are many other factors, such as your lifestyle choices, that can be involved in developing late-onset Alzheimer's. Better educated people for example, tend to have a lower risk. Family history matters, too. And what if you're part of an ethnic or racial group for which these results are less valid because most of the testing was done on people of a different descent?
Medical professionals called genetic counselors would normally talk a patient through their results, and 23andMe does state in several places on its website that "if you are concerned about your results, consult with a healthcare professional." But that also requires a separate charge, since genetic counseling services are not part of the $199 kit offered by the company. The job of a genetic counselor isn't just to interpret results for patients, but to counsel them on what to do about it, as well as how to contextualize and process the information. In fairness, 23andMe has been marketing these tests directly to consumers in Canada and Europe since 2014, and the company reports that in the UK, for example, there were no reports of self-harm among the 25,000 people who used the tests.
The FDA's decision to allow direct-to-consumer marketing of these tests has also renewed another, secondary debate: the sale of genetic data. In its privacy statement, the company is very open about your data being used by third-parties like pharmaceutical companies and nonprofits that are researching diseases. And people seem mostly okay with that: So far, roughly 80 percent of the two million people who have used a 23andMe kit have given the company permission to use their genetic data. The data is, of course, stripped of your name, but it has been shown that it's technically possible to match data back to an individual. (When reached for comment, 23andMe spokeswoman Rachel Reichblum pointed out that, in the Science study, researchers needed "a combination of a surname with other types of metadata, such as age and state," which the company houses separately.) Opening up genetic testing to curious consumers could give the company thousands to millions of additional individual datasets that it can sell to third-parties.
Having your data shared with pharmaceutical companies and the potential to have your name tied back to your results are not the only privacy concerns. Life insurance companies also have the right to request your genetic test results if you have already consented to testing before they grant you coverage. That means they can also choose to deny coverage if they find out you're predisposed to developing a debilitating disease. While health insurance companies were banned from demanding that same information, a Republican-sponsored bill is making its way through Congress that would give employers the right to ask for the results of any genetic tests. Reichblum, however, says the company does not provide any customer data—genetic or non-genetic—to insurance companies or employers without consent, and has declined the few requests it has received.
That all brings up another consideration: Should people get tested in the first place if there is nothing viable that can be done about a particular disease—and, worse, the data could be used against you? That's one reason why, sometimes, a doctor or genetic counselor may actually advise a patient to not get tested. Or as 23andMe's own website puts it, "Genetic testing for late-onset Alzheimer's disease is not currently recommended by any healthcare professional organizations." More information, in other words, isn't always better.
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UPDATE 4/18/17: A previous version of this article stated that 23andMe tested for diseases other than Parkinson's and Alzheimer's automatically. Customers actually must opt-in for all of those tests as well.
_UPDATE 4/20/17: A previous version of this article also stated that 23andMe makes most of its revenue from the sale of genetic data. The majority of revenue actually comes from consumer kit sales. _