Spit in a vial, pay $200, wait a few weeks.
You might find out you have a large amount of Neanderthal DNA. That you’re related to Napoleon.
Or, that you’ve accidentally been dating your half-sister and have a life-threatening medical condition.
That little genetic testing kit you got for Christmas can turn out to be more than you bargained for.
“Some people have had mistaken results,” Duke University law and philosophy professor Nita Farahany said.
“Some people have discovered things like their ancestry is not what they thought it was, some people have found that their parents are not what they thought they were. There are some psychological consequences to the information as well.”
23andMe has over 5 million customers. AncestryDNA has more than 10 million, and there are dozens more direct-to-consumer DNA analysis companies on the market.
Last year, one test connected a Philadelphia police officer with his dad for the first time, a former Philadelphia police officer himself.
Another test helped a woman find out more about her African heritage— tracing her roots to Nigeria.
But the popularity of the kits has drawn skeptics, too, who say that by sending in a DNA test, you’re putting your personal information at risk.
Your DNA, after all, might be the most personal bit of information you have.
Are these DNA ancestry kits safe?
23andMe says it won’t share your data without your permission, and has strict measures in place to prevent data breaches.
That doesn’t mean it’s not possible.
Data breaches have become more common in general, and cyber attacks affected billions of people last year.
If you use a DNA analysis service, that data could be stolen just as easily as it would be for someone to break into your email account.
“There’s always danger of hacking, and it’s not just 23andMe that faces this danger of hacking,” Delaram Kahrobaei, chair of cyber security at University of York and adjunct professor at New York University and CUNY Graduate Center.
But having your DNA information stolen isn’t quite the same as having your credit card or social security number stolen.
“If someone steals your credit card information, you can just replace your information,” Kahrobaei said.
“If someone steals your genomic data, it’s very hard to protect it anymore because these data are not replaceable.”
The consequences of this kind of breach would show up over the long term.
President George W. Bush signed the Genetic Nondiscrimination Information Act in 2008. The law bans discrimination based on your DNA. It protects your health insurance, and it protects you at work.
For example, your health insurance company couldn’t use your DNA information to find out you’re at high risk for a certain disease, and then raise your rates or refuse to cover you because of it.
However, the law doesn’t protect you when it comes to life insurance, or disability insurance, or at school.
So when you send in your spit, you’re agreeing to that tiny chance. For some, that risk is worth the information they get.
There’s just one problem.
Your family members don’t get the chance to click “yes” on that privacy agreement. And because of that, they might not be aware that by sharing your DNA, you’re sharing theirs, too.
A family affair
Last year, police identified a suspect as the notorious Golden State Killer — who killed 12 people and raped 45 women in California in the 1970s and 1980s — after decades of searching for his identity.
Because he had no past criminal convictions, Joseph James DeAngelo wasn’t in the FBI’s extensive DNA database.
But a distant relative did a home DNA test just for fun. Police were able to identify DeAngelo using the database from one of those genealogy sites.
While some might argue that’s a just use of the information, it’s an example of what can be traced.
In other cases, your relatives might be happy not knowing anything about their father. They might not want to know if they have any half-siblings. They may not want to be contacted at all.
Ask an expert
Over the past few years, many of these services have added health information to the test results in addition to ancestry information. That means you get stats about your likelihood to develop cancer, Parkinson’s disease and Alzheimer’s, among other things.
This information has an educational purpose. It can help inform you about lifestyle decisions, for example: telling you if you’re a fast or slow caffeine metabolizer.
But the results, while helpful, shouldn’t be the only thing informing your lifestyle, Farahany said.
That’s because it’s complex information if you don’t have a background in statistics or genetics.
“The information isn’t filtered through a physician,” she said. “The result is that many people may not understand fully what the risks are, and what it means when it says you have an increased risk of Alzheimer’s disease or breast cancer.”
If you get a health result that worries you, the best thing to do is take it to the doctor’s office, or better, a genetic counselor.
However, a shortage of genetic counselors may make it harder to get the information you need about your results in a world where more people are scrutinizing their DNA.
You may not be able to make big decisions without getting checked out by a doctor. However, deciding on your own to take a bunch of supplements or alter your diet dramatically based on DNA test results can also be harmful in the long run.
‘The end of privacy’?
In some cases, your medical data may be able to help others down the road.
23andMe gives users the option to opt in to sharing their data for medical research purposes, and says most users do. As a result, the data has been fueling research finding genetic variants associated with risk-taking.
The company has also partnered with pharmaceutical giants like Pfizer to identify markers for depression.
Farahany says companies like 23andMe have been able to learn things from the research that might help humanity down the road. That’s in part because of the sheer amount of data available.
“The only way we’re going to get to the point of getting good insights from genetics is having a lot of people’s genomes to analyze,” she said.
Some have privacy concerns about data sharing for research, as well.
A 2015 issue of the magazine Science talks about this kind of research as “the end of privacy,” giving up the anonymity we used to have in favor of the greater good.
There are already solutions in the works to help keep our info safe. One might be encrypting the DNA used in research for privacy.
This way, this type of research can be more accessible, but less invasive.
As with any type of information sharing, deciding to participate comes down to personal choice.
Farahany said she’s in favor of keeping the DNA testing available to consumers. But it might not be right for everyone.
It’s up to you to decide if the test has value for you and pit that against the risks, she said.
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