23 reasons not to reveal your DNA

DNA
Karyotype. Photo by Can H. (CC BY-NC 2.0).

DNA testing is a booming global business enabled by the internet. Millions of people have sent samples of their saliva to commercial labs in hopes of learning something new about their personal health or heritage, primarily in the United States and Europe. In some places, commercial tests are banned. In France, you could face a fine of around $4,000 USD for taking one.

Industry giants Ancestry.com, 23andMe, MyHeritage and FamilyTreeDNA market their services online, share test results on websites, and even offer tutorials on how to search for relatives in phone directories, or share results in social media. They often also claim rights to your genetic data and sell access to their databases to big pharmaceutical and medtech companies.

In terms of internet health, it’s part of a worrying trend of corporations to acquire personal data about people and act in their own best interests, not yours. OK, so test results can also lead to important discoveries about your personal health, and can also be shared for non-profit biomedical research in the public interest. But before you give in to your curiosity, here are 23 reasons not to reveal your DNA – one for each pair of the chromosomes in a human cell.

  1. The results may not be accurate. Some outputs on personal health and nutrition have been discredited by scientists. One company, Orig3n, misidentified a Labrador Retriever dog’s DNA sample as being human in 2018. As Arwa Mahdawi wrote after taking the test, “Nothing I learned was worth the price-tag and privacy risks involved.”
  2. Heritage tests are less precise if you don’t have European roots. DNA is analyzed in comparison to samples already on file. Because more people of European descent have taken tests so far, assessments of where your ancestors lived are usually less detailed outside of Europe.
  3. Your DNA says nothing about your culture. Genetic code can only tell you so much. As Sarah Zhang wrote in 2016, “DNA is not your culture and it certainly isn’t guaranteed to tell you anything about the places, history and cultures that shaped you.”
  4. Racists are weaponizing the results. White nationalists have flocked to commercial DNA companies to vie for the highest race-purity points on extremist websites.
  5. DNA tests can’t be anonymous. You could jump through hoops to attempt to mask your name and location, but your DNA is an unique marker of your identity that could be mishandled no matter what.
  6. You will jeopardize the anonymity of family members. By putting your own DNA in the hands of companies your (known or unknown) relatives could be identifiable to others, possibly against their wishes.
  7. You could become emotionally scarred. You may discover things you weren’t prepared to find out. A fertility watchdog in the United Kingdom called for DNA testing companies to warn consumers of the risks of uncovering traumatic family secrets or disease risks.
  8. Anonymous sperm and egg donors could become a thing of the past. The likelihood that anonymous donations will remain anonymous decreases with every test taken, which could dissuade donors and negatively affect some families.
  9. Millions are spent on targeted ads to lure you. DNA companies hand out free kits at sporting events, and create DNA specific music playlists on Spotify. In 2016 alone, Ancestry.com spent $109 million on ads. An ad by AncestryDNA capitalized on “Brexit” and British identity politics, with the slogan, “The average British person’s data is 60% European. We may be leaving Europe, but Europe will never leave us.”
  10. A pair of socks is a better gift. You may be tempted by special offers around holidays such as this one, offering 30% off genetic tests for Father’s Day: “What do you share with Dad? This Father’s Day, celebrate your DNA connection with Dad”. Perhaps the man who has everything would prefer not to become your science experiment.
  11. You will become the product. Your genetic code is valuable. Once you opt in to sharing, you have no idea what company gets access to it, nor for what purpose.
  12. Big pharma wants your DNA. 23andMe revealed a $300 million USD deal with pharmaceutical giant GlaxoSmithKline in 2018 that gives them access to aggregate customer data. Calico Life Sciences, a medtech company owned by Google’s parent company, Alphabet, is the primary research partner of Ancestry.com.
  13. Companies can change their privacy policies. You might be asked to give your consent again, but policies of companies can still change in ways you may not like.
  14. A company (and your DNA) can change hands. Companies are bought, sold, go out of business or change their business models. And then what happens with your genetic info?
  15. Destructing your DNA can be difficult. An investigation into how to delete your DNA from Ancestry.com found that it is possible to erase your record and allegedly even destroy your physical sample. But they don’t make it easy.
  16. You have no idea how long they will keep your sample. Some companies say they keep samples for 1-10 years. Regulations governing DNA databases differ from country to country. Do you know the rules where you live?
  17. Police can access your DNA. There’s crime solving potential, but also human rights risks. Authorities can seek court approval to access consumer DNA databases, but investigators have also been known to create fake profiles using a suspect’s DNA.
  18. Your results could become part of a global database. Law enforcement in several countries have unrestricted access to genetic profiles. Some scientists argue that creating a “universal genetic forensic database” would be the only way to make unwanted intrusion less likely through regulation.
  19. Your data could be hacked, leaked or breached. Third party sharing is common practice among companies. The more people have access to your DNA, the more vulnerable it is to being hacked. As companies amass more data, they will become increasingly attractive to criminals and vulnerable to cyber theft.
  20. Genes can be hacked. Scientists have discovered how to store data and even animated GIFs in DNA, and even believe malware could be placed in DNA to compromise the security of computers holding databases. Still trust them?
  21. You are signing away rights. When you use services like AncestryDNA the default agreement is to let them transfer your genetic information to others, royalty-free, for product development, personalized product offers, research and more.
  22. Companies profit from your DNA. Testing isn’t the only way companies make money. They profit from data sharing agreements with research institutes and the pharmaceutical industry. If your DNA helps develop a cure for a disease, you’ll never know. And you certainly won’t earn royalties from any related drug sales.
  23. You may be discriminated against in the future. In the United States, health insurers and workplaces are not allowed to discriminate based on DNA. But the law does not apply to life insurance or disability insurance. Who knows in your case, where you live? Some day you could be compelled to share genetic information with your own insurer.

If you still decide to submit your DNA for testing, the U.S. Federal Trade Commission offers sound advice to consumers: compare privacy policies before you pick a company, choose your account options carefully, recognize the risks, and report any concerns to authorities. To counteract the dominance of commercial companies, you can also contribute your data to non-profit research repositories like All of Us or DNA.Land that are open to public scrutiny.

If you regret a choice you made in the past, you could have your DNA data deleted and request that your sample be destroyed. Consumer DNA testing is an example of why strong data protection laws are so important. In Europe, the General Data Protection Regulation (GDPR) offers some protections, but elsewhere you have few rights when you hand over sensitive data.

Do you feel the benefits of DNA testing outweigh the risks?

  1. Brian

    There are so many inherent dangers in your DNA results falling in to the hands of big corporations is one of the scariest things in our digital world, at the moment!

  2. Anonymous

    I believe that my DNA is mine and no-one else's. It should only be used in a case of emergency and only with my consent.

  3. Anonymous

    Just to put a fact straight that was posted here by one comentor. Ancestry is a private company not owned by The Church of Jesus Christ of Latter-day Saints (often called Mormons). They have their own, free to use, family history website -FamilySearch.org

  4. Calvin

    Considering DNA is your ultimate identification number, giving it away to unknown entity is not wise choice. You can change your identity like name, credit card number, social security number, and even face transplant. But you can NEVER chance your DNA sequence on the event of identity theft.

  5. Anonymous

    Considering Ancestry.com is ran by the Mormon Church, no, I would never trust them with anything especially my DNA.

  6. Rebecca

    As a person with a long history of being involved in medical studies because of rare health issues, I see the value in having a large database of genes and health histories to develop treatments and find connections to health risks previously unknown. Our medical knowledge now is based on a very limited, very exclusive, set of people who are already ill and willing to be studied. The knowledge expansion will be exponential using millions of random and healthy genesets to understand how and when disease develops. Yes, this is an industry in infancy, and there are risks to privacy. But yes, the potential for development of previously unexplored human knowledge is also amazing. We are writing an encyclopedia.

  7. Del

    I have used Ancestry for years. I know of users who believe that the co-operation between believing donors can allow them to search back in time beyond the available samples. Tosh. Available samples must be a minute non representative sample :how many people use Ancestry, how many of them give DNA, how many then communicate together accurately and vitally how many use the data for dubious reasons?

  8. Gospace

    "Anonymous sperm and egg donors could become a thing of the past. "

    Sounds like a desirable outcome to me.

  9. Anonymous

    Surely your DNA is available to anyone who can obtain a sample of any part of you e.g. hair. Are you suggesting we attempt to protect all this?

  10. Anonymous

    There should be safe guards to protect us . That seems to be impossible . There is always someone out to make a profit . It is amazing how many people are taken in by greed . God bless us all

  11. Anonymous

    This is way, way outside of what should be your core mission. Make my browser safer and faster, don't lecture me about DNA testing.

    I hoped you'd at least raise some interesting points about DNA privacy and its importance but this sorry list oscillates between comical (Big pharma wants your DNA/You could become emotionally scarred) and irrelevant (A pair of socks is a better gift).

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  13. Justin Case

    In thisday and age when we guard our passwords and usernmes from even family members, why would one make their most personal and private information available to companies carte blanche? They ffer only the most minimal of security when protecting your information. Heck, for a song they share it amongst other companies without your knowledge. THey will make money off anything and everything you allow them to and I repeat this is your most PRIVATE and PERSONAL information n your possession.

    As for the "cultural" background information you will obtain, humbug! What makes you who and what you are today is your parents. Yes, it may be great saying you were related to Alexander of Macedon, but WHAT does it give you IRL? No one has gone out to learn Greek, let alone Classical Greek as spoken by him, because there was a great ancestor in their background. It may have provided a push, but not the reason. Interestingly, a good set of history books can tell you more about your "culture' & "background" than a DNA test.

    Hey, Europeans out there, are you aware that the Gauls, from whom French is derived ranged in Europe from the Iberian Peninsula to the RHINE River? That means from France to Germany. They called themselves Celts, yes,the appellation reserved for the Irish! Would any of that affect you today? Nope, the customs and traditions you grew up with are the strongest influence in your life. Even if, as is normal, you rebel from them in the late-teens and twenties, you will eventually come back to them in some modified but recognizable form.

    So, in effect, there is no "cool" factor to getting your DNA tesetd. You are only playing into the hands of money-hungry and less than moral agents and jeopardizing a lot of peoples' "personal" space in its broadest sense.

    Simply put: DON'T DO IT. What you loose is worth MORE than what you gain. IMHO.

  14. CP

    About a decade ago, I did a blog that stated indefinite retention provides the police with a DNA database that would eventually span the UK population as familial DNA techniques improve.

    https://amberhawk.typepad.com/amberhawk/2009/12/indefinite-retention-produces-a-dna-database-that-spans-the-population.html

  15. Anonymous

    I wish the "share" options included email especially since your readership might be social media averse.

  16. EasyEd-2

    I'm with EasyEd. Except that to me, his first paragraph is a little confusing.
    Many people are curious about their origins, etc. but that should not a reason for all to go charging off to obtain DNA tests. Another person felt the need to obtain three (3) tests, what did they expect to get? Did they feel the first/second result were incorrect and if so what gave them that idea? Otherwise, all the results should have been exactly the same - what a waste of time, effort and expense (cost).
    EasyEd's last paragraph sums up the whole event,
    quote
    " We all have opinions and I respect yours, even if you disagree with mine. I just wish everyone to make informed choices concerning various risks, information validity and personal privacy before determining what is the right course of action for themselves."
    unquote
    A couple of questions - what drew Mozilla's attention to this subject?
    Can they provide 23 reasons why anyone should have a DNA test?

  17. Anonymous

    DNA represents something essential about each individual, something that should not be commoditized. If personal liberty is to remain an essential part of the American opportunity, then we need to craft laws that restrict commercialization of DNA.

  18. Lawrece Mitchell

    To late I have already purchased and returned the test to My Heritage (not cheap for a pensioner) now to try and get rid of the lot including my family tree etc.

  19. Joseph

    I understand that there are risks involving personal information and relatively new evolving technologies. However, DNA testing has been a positive development whereby my wife was able to unite with relatives after a long resesrch. We do not pay much attention to the health profile, realizing that the science behind this factor is sadly lacking. Using DNA data to further reseach should not be so alarming as long it us used in a aggregate form.

  20. Kris

    There is so much good we could use many of these new technologies for, but until there is some semblance of true governance in the human interest, it's way to risky to participate in these projects. I do dream of a time when we are all actually working cooperatively to solve urgent problems, instead of playing the "competition" and "profit" games and lying to ourselves that it somehow is making things better for the majority of us. I optimistically believe this time is nigh : )

  21. CP

    98% of this post is sensationalized nonsense. There have been several investigations (video recorded visits) that service 23andMe delete your data if requested. https://www.youtube.com/watch?v=U3EEmVfbKNs Knowing some of your key genetic markers may allow you to bio-hack your lifestyle (via diet, or plant or pharma molecules) in order to stave off potential diseases potentially increasing your health span. Services such as Prometheus and FindMyFitness offer analysis and reports utilizing the raw SNPs genetic data from 23andMe (https://www.promethease.com/ and https://www.foundmyfitness.com/genetics ). This data could be the difference between living a healthy life with a short death process or spending the last 10 years sick and drooling as a burden to others.

  22. EasyEd

    Sister-in-law and her sister did the 23&Me test. Same parents, same grandparents and great-grandparents. One identified as of primarily Scandinavian/Caucasian ancestry, the other primarily African/Negroid ancestry -- primarily meaning over 60% markers. How can that be?

    I've been a genealogist since 1993 and generally recommend my clients not rely on such potentially faulty information. I have often traced families back 400 years (some even more), including documentation. Although not usually necessary, I recognize that in some cases an individual may deem it worth the risks. If deemed worth it, why not first spend some time in available research opportunities and attempt to build a family tree with absolute documentary validation following Genealogical Proof Standards before taking the test? It's an enjoyable -- some say addictive -- project, and it provides the opportunity to learn about history and migration patterns, both on other continents as well as North America. For example, there is a reason why such a large number of families moving west from the southeast traveled through Etowah County, Alabama: and why one group of westward-movers decided to make Big Spring, Texas their new home.

    We all have opinions and I respect yours, even if you disagree with mine. I just wish everyone to make informed choices concerning various risks, information validity and personal privacy before determining what is the right course of action for themselves.

  23. Donald

    Ancestry.com had my half brother ( same mother, different father) has my first cousin)

  24. Anonymous

    I was put into foster care as a small child (not an infant) and later adopted. I did opt for DNA testing knowing the risks and have had the great gift of meeting several of my biological cousins. I also found out more about my biological parents and why I ended up in foster care. That part of the story was not "pretty" but I am glad to know it. If it were not for the lack of family history, I wouldn't recommend doing it. If you have a family history, embrace it and forget the DNA testing. If you don't and you're willing to take the risks, I feel it is totally worth it.

  25. Anonymous

    Insurance discrimination risks at #23 vs. "purity" White racists at #4? Are these items listed in order of risks? SMH!

  26. Anonymous

    I’m totally astonished how brainwashed we are these days . There is almost no entity out there that is marketing you, that gives a damn about you except for making money off of you. I would never give my dna willingly, I don’t fill out my health plans “ wellness questionnaire “ and I know when the product is actually ME . There’s no doubt the horror stories will be coming in the future from all of this,when you are denied access to something because of your “ possibly accurate “ dna results. Sheep .

  27. L H

    I have taken several dna tests to use with family history research and it has been a fascinating and successful endeavor. This article generalizes, uses scare tactics and contains some inaccuracies. If someone wants your dna there are multiple ways to get it whether you have tested or not. Heritage dna science is relatively new and the more people who test the more accurate it becomes. It has brought joy to many who are seeking their biological roots. As with any new tech development there are social adjustments. As a race we are designed to adapt to changes.

    DNA fan

  28. John Algeo

    This probably doesn't happen often, but in my case, the company that I submitted a sample to couldn't find my results. So I haven't been enlightened about my genetic background, but I have lost the money that I was charged for the testing.

  29. Anonymous

    "Racists are weaponizing the results."
    Huh? Should we all stop using the internet because racists also use the internet? What a silly reason.

  30. Anonymous

    No. 23 should be No. 1, that is the scariest risk.

  31. Anonymous

    I can't see the point in paying out good money to discover something which might be best left undiscovered.
    Also I'm not too sure about your grammar, shouldn't 'view less comments' really read 'view fewer comments'?

  32. GFAU

    The information about France is inaccurate. It is perfectly legal in France to take an ancestry DNA test. What is forbidden is to take a health markers DNA test. I found the results of the test very interesting to better understand our roots.

  33. Morticai

    What about specific encoded by your DNA bio weapons made by terrorists what makes us different could make you a target food for thought.

  34. Jamshed

    Curiosity killed the cat! Why submit yourself to such tests unless it is advised for your well being, by a reputed and qualified medical practitioner.

  35. Anonymous

    I would not be too worried about the world seeing my D A I have taken the test

  36. Horation Hornblower

    What folly to hand over your most intimate personal information to corporations who will monetize it? Greater folly to pay them to do it!

  37. Mike

    Many thanks to Mozilla for highlighting the risks of unnecessary DNA testing.

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