by: E.B. Johnson
We are living through historical times. Advances in technology and science have made leaps possible that we could not have imagined even twenty years ago. Among these major advances is consumer DNA testing — an at-home process that allows the average person to trace their genetic heritage at home. While this advancement comes with several benefits, it comes with several downsides too. In order to make sure we’re getting the experience that we need, it’s important to address these flaws so we can make the best decision for ourselves.
The dark side of consumer DNA testing.
Despite what they may preach through their carefully crafted marketing campaigns, consumer DNA testing does come with considerable downsides. When you take a realistic look at the way some of these companies operate, you can see a lot of potential holes, which should give us all pause for thought. Before you invest in 23andMe, Ancestry, or any other consumer DNA company, make sure you’re clear on all the potential consequences.
It’s not hack-proof
Perhaps one of the most immediate and alarming shortfalls of the consumer genetic testing wave is the potential for data hacking. That’s right. There’s a lot of information that these companies keep on you, and wherever information is stored — it can be stolen. That was proven when a mega-haul of 92 million accounts from MyHeritage were discovered on a private server. It’s important to make sure you’re dealing with a company that has extensive data security practices, as well as a commitment to keeping your information safe (no matter the cost).
There’s limited protection
While it may seem that it would be in the interest of companies to keep your information (and your DNA) private, there’s aren’t a ton of laws which govern what they can and can’t do with your genetic material. Although GINA (or the Genetic Information Non-discrimination Act) stipulates that private companies cannot access your data, that law is limited in its reach. Anyone who receives their insurance through federal government is exempt from these acts, so their information can — in theory — be more widely accessed. It’s uncharted territory where your info exists in a gray zone.
Privacy statements change
You might think that a privacy statement is binding, but that isn’t necessarily the case. Some companies offer limited protections, which they can (and do) change as it suits them. Even the companies that offer consumers protection can change their policies and privacy statements. When that happens, there’s always the chance that they could leave you and your genetic information out in the lurch. Be aware: the privacy statement that you sign now may not be the privacy statement you stay bound to.
Law enforcement access
Perhaps one of the scariest downsides of genetic testing, law enforcement agencies are gaining increasing access to more and more genetic samples and information. While this might seem helpful in the instance of solved cold causes, it also creates some very intense question of ethics, privacy, and public safety. As it stands now in the United States, law enforcement can gain access to your DNA with court subpoena — which is relatively easy for them to attain. Any time you or someone you are related to give their genetic information, you’re potentially creating a door for law enforcement to enter your life.
Turning a profit
Consumer genetic testing companies are private businesses. Their job is to make money for their shareholders and turn the biggest profits that they can. While you may think this is done strictly from your purchases — that’s not what diversifying income looks like. There are companies that sell your information and DNA to research partners in order to increase their profits. While you may opt in for this research, it’s still not always clear that further profit is made on your info. Essentially, this turns. you into a for-profit lab rat (which you paid for the privilege of being).
Inaccuracy is common
Every DNA testing company promises the most accurate and advanced results, but that simply isn’t the case. With the growing popularity of genetic testing, new companies are popping up everything and not all of them are playing by the same rules. While some companies have gone the distance to get extensive certifications from governing bodies around the world, other companies with a more “wild west” approach are going into the game unaccredited. In short, this means they haven’t undergone the same rigorous certifications as other companies. This could leave you vulnerable in accuracy and privacy.
Serious emotional fallout
There is one final dark side to consumer DNA testing, and it’s one that is often the last considered. When you dig into the genetic history of your family, you may uncover big secrets that destroy your sense of reality and — potentially — another family who had no idea you existed. Families are being ruptured around the globe as deep hurts and infidelities are realized for the first time in generations. Before you use that swab, it’s important to consider the phenomenal emotional weight you may be opening the door to. Are you ready to handle the most painful of truths? It’s always a possibility when genetics are involved.
How to use consumer DNA tests responsibly.
If you feel driven to investigate your medical or genetic history with a consumer DNA company, it’s important to do so responsibly. Keep the above pitfalls in mind, make sure you’re prepared to deal with any potential mental and emotional fallout the can result from new discoveries. Do your research. Find a company with practices that leave you feeling confident. Know, however, that DNA isn’t the full story. There’s line and limits to everything, and consumer DNA testing is no different.
1. Make sure you’re prepared
Because we get so caught up in the exciting idea of realizing who we are at a genetic level, we often don’t consider the very real world emotional fallout which can result from these experiences. Before you so much as order a test, you need to make sure that you (and your family) are prepared for any emotional consequences that may result from your digging. Families have secrets and — more often than not — those secrets are kept to protect its members from pain, guilt, and soul-destroying shame.
Make sure you’re prepared for the both the highs and lows of the potential discoveries that may be uncovered. Family secrets might come to light. You may be introduced to people you don’t want to know, and truths that rupture your sense of reality, your stability, and the connection you feel in your family.
Are you prepared for that leap? Make sure you’re mentally and emotionally on the right footing before you open a can of worms. If you can, make sure you have a plan in place to commit to self-care (and even therapy) in the aftermath. Prepare yourself for arguments, hurt feelings, and realizations that can never be taken away. You need to know also that you could be irreversibly damaging someone else’s life. There may be another family out there who doesn’t know about you…and they may be happier that way.
2. Do your research
Genetic research companies have done a fantastic job marketing themselves as a “relaxed-fit” alternative to discovering your family heritage. Instead of doing the work to interview family or dig through ancestry archives, these companies promise to reveal all to you with the swipe of a swab. On top of that, they promise also that they’ll do it wholesomely, safely, and casually. But that’s just not the case. Playing with your genetics, and exposing this information to others, is a big deal with real-world consequences.
Do your research. Make sure you are fully armed and knowledgeable when it comes to DNA companies, their practices, techniques, company cultures, and the science behind their product. Make sure too that you have a total awareness of all potential downsides that could arise.
Some ancestry DNA companies are better than others; some have more thorough techniques, and others have more questionable practices. It’s important that you take the time to shop around and find the company that makes the most sense for you, your goals, and your budget. What do you hope to get out of the process? Talk to your family, too. This is a process that also exposes them and their DNA. You need to sit down and have a family conversation about what comes next and any information that needs to be shared.
3. Know it’s not the full story
If you’re someone who came from the analog age, seeing the boom of genetic testing is fascinating and (in some respects) awe-inspiring. What was once fodder for movies like Jurassic Park and Gattaca is quickly becoming our waking reality. Because the idea of genetic testing is so impressive, we put a lot of weight on it. But testing our genetics in terms of tracing our family tree is only a snippet of what we’re trying to discover. We have to remember this as we dig in, and keep these tests mindfully in the right place.
DNA isn’t the full story. It gives you the snapshot of a biology; it doesn’t tell you the story of the people behind it, or what molded and shaped their lives. You don’t know about an abusive partner, a desperate act. If that’s the story that you want to find, you’re better off investing in good-old-fashioned genealogy.
Your genetics aren’t the end-all and be-all to the story of your family. Use it for your health. Use it to answer questions that you can’t resolve by any other means. There are wonderful uses for genetic testing, but it’s a powerful resource and should be used with mindfulness and the right intention. When you’re sure of yourself and your goals, it’s a great starting place on your journey to re-discover self and the story of your loved ones. Use it wisely, though, and make it a part of the process rather than the focus of it.
Putting it all together…
Consumer DNA testing companies are all the rage these days, but are they really as safe or effective as they promise us to be? Although they can provide us with important answers in regards to health and family dynamics, there’s a downside to using these companies to trace our pasts too. Before you invest too heavily in the whole process, it’s important to be aware of the potential consequences of selling your genetic information to the highest bidder.
Do your research. Really dig into the meat of the DNA company you decide to use and use an accredited company that has the practices and technologies that you most believe in. Before you commit, it’s also important to consider what the consequences might be. Make sure you’re prepared for the emotional fallout and any negative discoveries you might make. Don’t forget, though, that it’s only a snapshot. Your DNA can only tell you about an instant in time. It can’t tell you the story of the people behind it, or the circumstances that led them to the crossroads in their lives. Take your DNA results with a grain of salt. Invest in the people around you if you really want to discover the history of your family.
- Burke, W., & Trinidad, S. (2016). The Deceptive Appeal of Direct-to-Consumer Genetics. Annals Of Internal Medicine, 164(8), 564. doi: 10.7326/m16–0257
- Phillips, A. (2015). Genomic Privacy and Direct-to-Consumer Genetics: Big Consumer Genetic Data — What’s in that Contract?. 2015 IEEE Security And Privacy Workshops. doi: 10.1109/spw.2015.19
- Zabel, J. (2019). Killer Genes: a Legal and Ethical Analysis of the Forensic Use of Direct-to-Consumer Genetics. SSRN Electronic Journal. doi: 10.2139/ssrn.3368705