How Gene Testing Forced Me to Reveal My Private Health Information

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The first time a doctor told me he had no idea what was wrong with me, I was six or seven years old. As I grew up, my mysterious health problems—ranging from muscle weakness and debilitating fatigue to gastrointestinal issues and pins and needles in my hands and feet—were blamed on everything from my imagination to stress.. But when I hit my early 30s and began struggling to breathe, my doctors finally took my symptoms seriously.

I didn't get an answer right away. I was tested, misdiagnosed, and tested some more before my doctors finally had an idea: mitochondrial disease. Unlike many diseases, mitochondrial disease is a rare disorder that requires genetic confirmation to make a formal diagnosis.

Insurance was the last thing on my mind when my doctor suggested I have my genes tested. All I wanted was an answer and a treatment plan, and without a diagnosis there was little anyone could do. I had no idea that my genetic test results could prevent me from obtaining insurance coverage in the future—and I doubt most people who buy genetic testing kits online are thinking about the long-term risks of having their genes sequenced when they click purchase, either.

The information contained in your genes can't be held against you by health insurance companies or most employers (excluding the military), thanks to the Genetic Information Nondiscrimination Act of 2008 (GINA). The Affordable Care Act also prevents health insurers from using chronic illnesses and pre-existing conditions, including genetic diseases, to deny coverage or hike up your insurance rates. Where healthcare is concerned, you're unlikely to run into problems with insurance coverage based on your genes alone.

Other types of insurance are a very different story. GINA doesn't cover three major types of insurance: life, disability, and long-term care. Only a handful of states have stepped in to pass their own laws prohibiting genetic discrimination by these types of insurers. This means that insurers can (and do) ask for genetic testing results to make decisions about your coverage and rates. This risk isn't confined solely to people who find genetic mutations that cause diseases they already have, like me. The same risk applies to anyone whose genetic testing indicates a higher risk of developing diseases like diabetes or cancer in the future. Spoiler alert: that's pretty much everyone. A predisposition to diabetes might only bump your premium slightly, multiple experts confirmed, but a predisposition to cancer or neurodegenerative diseases like Huntington's Disease could be enough to deny your application entirely for any of the three types of insurance not covered by GINA. "The genie is out of the bottle," Troy Moore, chief science officer at Kailos Genetics, told VICE. "Many [insurers] are exploring ways of determining how to utilize [genetic] testing, when it is appropriate, and how to communicate with their policy holders."

Direct-to-consumer genetic testing providers like 23andMe market their services as fun and educational, rather than as serious medical testing. What they don't tell you is that insurance providers don't make a distinction between genetic tests ordered by a doctor and the ones you click and buy on a whim on Groupon. Since most of the medical information requested on insurance forms is self-reported, you're just as obligated to report genetic test results you get from your doctor as ones you order online. Failing to disclose requested medical information can result in termination of your policies years after the fact; in the case of a life insurance policy, it can even result in termination of coverage and zero payout after your death.

The real difference between the genetic testing you get through a physician is that they provide pre-testing genetic counseling, in which a qualified expert helps you interpret your results. Even though 23andMe doesn't provide genetic counseling services—and there isn't a single disclaimer or statement of risk to read before you click purchase—any negative results they find still have to be disclosed to potential insurers down the line. "We do everything we can to be good stewards of individual information and empower customers to learn and benefit from many aspects of their genetic identity," Kate Black, 23andMe's privacy officer and corporate counsel, told VICE. "We rely on them to be educated and empowered customers. " However, some basic investigating revealed that there is very limited information about GINA in 23andMe's customer care section.

When consumers are informed about the potential risks of genetic testing, they often change their minds. Kailos Genetics shows interested consumers a video that discusses the risks before they complete their purchase. The number one reason customers gave after deciding not to continue with their purchase was the threat of long-term consequences. "Often a person has prepared themselves to take the test and the personal implications that go along with it, only to realize that it could put them at risk of [being denied] insurance coverage," Moore told VICE. "They do not wish to take the risk of the results entering their medical record and being available to the insurance companies."

After having both my mitochondrial and nuclear genomes tested—yes, you have two separate genomes; most people just get the latter tested but because of my medical situation I had both—spent somewhere in the ballpark of $20,000, and waited nearly six months for results, all I got was an educated guess.

My genetic testing turned up a mutation that could, in theory, cause a form of mitochondrial disease. But it will take years, maybe even decades, of medical research to know for sure. In the meantime, I have the same fuzzy "suspected" mitochondrial disease diagnosis I had before all of that expensive testing, and there's no way I can get life, disability, or long-term care insurance now. Even if my health improves in the future, I will always have that genetic testing hanging over me.

For parents of sick kids, genetic testing is even more complicated. Nichole Rust and I connected through a Facebook group for families of mitochondrial disease patients. Like me, her son is suspected of having mitochondrial disease. In order to get the most accurate picture of her son's genetic testing results, his doctors have asked her to have her genes sequenced, too. This is very common when genetic diseases are suspected because it helps doctors interpret the child's results. But it also puts healthy family members at risk: They may find that they carry the same mutated gene as their sick child, or another one entirely. "I've still not done it," Rust told me. "I have concerns with these types of things." For now, Rust has opted against having her genes tested, even though by doing so she knows she is potentially withholding information that could help her son's medical treatment.

While insurance coverage is one risk, it's not the only way genetic testing screwed me over. When I was told I could have mitochondrial disease, it completely changed my perspective of myself and my life. I lost my hope for the future, and feared that all I had left was a progressive march toward worsening health. As difficult as my health problems themselves are, it was the lack of hope brought on by seeing my genetic mutation in black and white that was truly devastating.

My reaction isn't rare. "The findings from some genetic tests can be life-altering, and people should decide whether or not they wish to receive the results after substantial contemplation," Adam C. Powell, a healthcare economist and adjunct professor at Northeastern University, told VICE. "Genetic discrimination is a real threat now, and the negative ramifications of genetic tests can come not just from insurers, but also from within [yourself]."

In spite of all this, genetic testing can be life-saving. Moore pointed out that many of his company's clients have a family history of life-threatening cancers, and genetic testing can help them access screening and prophylactic treatments. These changes can mean the difference between catching a cancer when it's very treatable versus when it's extremely advanced and unlikely to respond to treatment. It's also possible for people with a positive family history to find out they don't carry a certain gene, and are actually at a lower risk of that disease than their family history would suggest.

Even in my own case, my genetic testing didn't confirm my mitochondrial disease diagnosis, but it did rule out pretty much everything else. By ruling out other diseases that mimic mitochondrial disease, my doctors have been able to move forward with a treatment plan that has improved the quality of my life in small ways, while abandoning previous approaches that were often unsuccessful and sometimes even made things worse. Through time, I even regained my hope for the future.

The takeaway for now isn't that no one should undergo genetic testing; it's that consumers need to be educated about all of their risks and take steps to mitigate them. This can include signing up for comprehensive insurance policies before making the decision to pursue genetic testing, and using a lab that offers genetic counseling services or doing your own research to make sure you fully understand all of the risks. Despite their commercial billing as fun, genetic tests aren't a toy or something to choose lightly.

I'm glad I got my genes tested even though it didn't give me the clear-cut answer I was hoping for. But if I had it all to do over again, I would make sure I got my insurance coverage taken care of before I signed on the dotted line.