Everything to Know About Genetic Testing and How to Protect Your DNA Data

By 2019, more than 26 million people around the world have added their genetic information to ancestry and health databases. Databases include Ancestry.com or 23andMe. The trend of sending away cheek swabs or saliva for testing by commercial companies in order to reveal our genetic history first became popular in 2017. It then exploded even more a year later. However, what most people believe is a harmless, is actually an invasive process with massive implications on individual privacy. Here’s everything you should know about how genetic testing impacts privacy and how to protect your DNA data:

• Your genetic code may be sold
• Criminal investigations may access DNA databases
• Genetic testing can affect insurance
• The process may impact health
• Laws need more development
• Data hacks can occur
• You may find unpleasant surprises
• How to stay protected

Your Genetic Code Can Be Sold

The DNA testing business is an excellent way to learn about your ancestry and health. It’s also an excellent way for testing companies to collect massive amounts of data about their clients. Many think they keep that information to themselves and use it for further research. However, several genetic testing businesses actually sell the data they collect to third-parties. And they don’t necessarily care who the buyers are. By shipping your genetic code away to be studied, you may unknowingly also offer it to third-parties. They include pharmaceutical companies, law enforcement, and even insurance businesses. Even if the data is anonymous, there is always the chance traces can lead back to you. If you don’t know how to protect your DNA data, your most personal information could end up in the hands of complete strangers.

Criminal Investigations May Access DNA Databases

In 2018, police arrested and charged a man they believed was the Golden State Killer, a prolific serial killer active in California in the 70s and 80s. The arrest came after officials uploaded the DNA of the killer to GEDmatch, a genealogy database. Despite not taking a test himself, the suspect was caught because the database matched him to distant relatives who did test themselves. While the outcome was undeniably positive, the case raised a few ethical questions. For those interested in learning how to protect your DNA data, always look for opt-out options. They prevents your information from indexing in searchable databases.

Genetic Testing Can Affect Insurance

Since the trend of commercial genetic testing began, concerns have arisen that the data harvested could actually affect a person’s ability to qualify for insurance. For example, a genetic test may reveal that a person is statistically likely to develop heart disease or cancer. An insurance company that knows this could deny coverage based on the risk factor. Thankfully, there are some protections in place that prevent companies from discriminating against clients based on genetic factors. However, as at-home DNA testing becomes more popular, the laws may change. In order to avoid possible discrimination, you must learn how to protect your DNA data.

The Process May Impact Health

Insurance companies may use DNA data for malicious reasons, in order to deny health coverage. However, many people use this information positively, as an early warning system against diseases they could be genetically prone to develop. While this use of genetic testing is great in theory–people can make proactive lifestyle changes and discuss ways to reduce future risk with their doctors–the science behind disease predictions isn’t as good as believed.

This form of testing doesn’t take into consideration lifestyle habits, like diet, environment, and drugs, smoking, or alcohol use. Some tests even provide false positives. This occurred in the case of a woman who scheduled preventative breast surgery when a DNA test erroneously informed her that she was at significant risk for developing breast cancer. The surgery was called off at the last second when a clinical test found that the commercial results were wrong. Disease predictions may also contribute to the development of health-related anxiety.

Laws Need More Development

Commercial DNA testing is still a relatively new process. Because of this, the laws surrounding the business are underdeveloped or non-existent. That means there are few restrictions regarding what a company can do with client data. It can be stored, sold, and studied, often without user consent.

Data Hacks Can Occur

Even if you use a reputable company with a consumer-protecting privacy policy, the risk of genetic database hacks is one everyone must know. That means that your data could leak even if you send it to a company that doesn’t sell it to third-parties.

You May Find Unpleasant Surprises

Finally, many DNA testing businesses warn customers the data they received from their test might not be what they expect and it might not be pleasant. Cases have arisen where users discovered that the person they believed was their biological parent was not. Some have also discovered and contacted secret half-siblings or other relatives, thanks to companies sharing contact information between users. These results can have far-reaching impacts into your personal life and relationships. In the case of accurate health information, some users may also learn that they’re at risk for serious diseases that significantly reduce their lifespan, which may surprise and upset them.

How to Protect Your DNA Data

The most effective way to keep your DNA data safe is to not have it tested in the first place. However, sometimes curiosity wins out over our best judgement and the urge to dive deeper into our genetics wins out. In these cases, there are a few ways to help keep yourself protected:

• Read Privacy Policies: Before shipping your DNA off for analysis (and possibly sale), read the privacy policy of the company you want to use. This policy should outline what the company does with your data so there are no surprises down the road. However, be aware that a company can change their privacy policy. What you thought was a safe choice may not remain so.
• Choose Big Name Companies: Big genetic testing companies, like Ancestry.com and 23andMe, are more likely to be reputable choices. Their business practices face higher scrutiny. Therefore they’re more likely to feel the impact of public outrage if those practices verge into unethical. Larger companies are also more likely to have better funding and technology with which to analyze your DNA.
• Look for Opt Outs: Even if a company wants your data, they may offer an opt out option. During sign up, keep an eye out for check boxes and settings that increase your data privacy. In many cases you can also change your privacy settings down the road.
• Delete Data: If you’ve already given your DNA away and realize later your privacy settings weren’t as strong as possible, never fear. Many reputable companies allow you to delete your information from their databases after it has already been collected. However, if your data was already sold to third-parties, tracking it down may be impossible.

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