Editor’s note: the following is a good reminder why privacy is so important for the average person. Revolutionaries need to take these considerations even more seriously.
via Mozilla / Internet Health Report
Photo “Karyotype” 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.
- 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.”
- 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.
- 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.”
- Racists are weaponizing the results. White nationalists have flocked to commercial DNA companies to vie for the highest race-purity points on extremist websites.
- 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.
- 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.
- 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.
- 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.
- 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.”
- 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.
- 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.
- 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.
- 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.
- 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?
- 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.
- 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?
- 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.
- 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.
- 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.
- 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?
- 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.
- 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.
- 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.