Strand of worms
Online DNA testing may reveal more than we bargained for and be used against us in far-reaching ways, warns Noel O’Hare. It could also save our lives.
Afew months ago, out of idle curiosity, I filled a tube with saliva and sent it off to Ancestry.com. It wasn’t the best decision I’ve made in my life, but fortunately, I don’t have a whole life to regret it. At the time, it looked like a bargain. Over the past couple of decades, the price has dropped about $1000 to less than $100 today. No wonder, then, that consumer DNA testing has skyrocketed and is now an $8 billion industry. It’s promoted as an easy and fun way to find relatives or uncover ethnic origins. Discovering you are, for example, 20% Italian is a fun fact to share with friends on Facebook or over drinks.
But this is only scraping the surface of the technology. DNA therapies open the door for personalised medical measures to both prevent and cure disease. DNA analysis has the potential to give us real insight into our traits and behaviours. The pious entreaties of philosophers down the ages “to know thyself ” takes on new meaning. But we’re not there yet. And where we are now can sometimes be scary and threatening.
Most people would be reluctant to shed their clothes in public, but nudity is nothing compared to how they expose themselves by handing over their DNA. Personal privacy is ripped to shreds and family secrets laid bare. Sperm donor conceptions, infidelities, adoptions and even crimes can no longer be covered up. DNA testing means it’s
Nudity is nothing compared to how we expose ourselves by handing over our DNA.
no longer possible to bury the past. That drunken one-night stand, workplace romance or holiday fling decades ago could turn out to be unfinished business that involves a back demand for child support. It takes only one relative to upload DNA to a genealogy site to make it possible to trace an individual.
Even taking family secrets to the grave is no longer a certainty. Canadian firm Lazarus DNA, for example, works with undertakers to collect DNA samples for families. Australian company totheletter DNA offers “commercially available testing of envelopes, postcards with stamp/s, aerogrammes and other artefacts from deceased relatives”. Presumably, it could also be used to find out who your grandmother’s lover was from her stash of love letters or track down the sender of a poison pen letter.
Although consumer DNA tests are great for tracing relatives, they can be less accurate about determining ethnicity, especially if you are non-European. Genealogy sites provide a pie chart showing percentages of your ethnicity estimates. But an estimate is all it is: it all depends on the size and composition of the company’s database and the algorithms it uses. Ancestry, for example, has correctly pegged me as 100% unadulterated bog Irish, while another site insists I am 6% East European. If your DNA ethnicity test shows that you are, say, 11% Greek, that percentage can change or even disappear as the company’s database grows or it refines its algorithms.
A HYPOCHONDRIAC’S DREAM
When the thrill of discovering they have a third cousin twice removed in Patagonia wears off, many people want to know what else they can get for their 100 bucks. If they haven’t taken the 23andMe DNA test, which combines ancestry and health reports, there are plenty of sites where they can upload their DNA profile to find out about possible health risks and traits. It can be a hypochon
I found I was a carrier of a potentially deadly genetic disorder and had increased risk of coronary heart disease.
driac’s fantasy. For example, when I tested on the reputable Promethease website, I found I was a carrier of a potentially deadly genetic disorder, had increased risk of coronary heart disease and type 2 diabetes, among other things. None of which caused me concern. The genetic disorder is only a problem when both partners are carriers and higher risks of heart disease and diabetes are common for my age group and can be mitigated by a healthy lifestyle. But I guess I would say that, because my DNA suggests I am optimistic by nature and less prone to be neurotic.
23andMe says its health reports are 99% accurate and have the seal of approval of the US Food and Drug Administration. The company offers a range of health predisposition reports for kidney disease, dementia, lung and liver disease, coeliac and Parkinson’s disease. It is probably best known for detecting BRCA1/BRCA2 variants, which predispose women to breast, ovarian and other cancers. The results are accurate – as far as they go. Which is not far enough. Consumer DNA tests focus on only 700,000 letters of the 3 billion that make up a complete genome, an exercise that has been likened to spellchecking just one paragraph of a book. In 2019, the New York Times reported on a study of 100,000 people which found nearly 90% of participants who carried a BRCA mutation would have been missed by 23andMe’s test.
However, the company is upfront on test limitations, stating on its site: “Having a risk variant does not mean you will definitely develop a health condition. Similarly, you could still develop the condition even if you don’t have a variant detected. It is possible to have other genetic risk variants not included in these reports.”
In any case, DNA is not destiny. Most identical twins do not die or even suffer from the same diseases.
FALSE PROMISES
DNA testing companies also promise to reveal your personal traits, but the results are equally problematic. 23andMe, for example, claims you will “discover what makes you unique” by revealing more than 30 different traits, from the ability to match musical pitch to the propensity to attract mosquito bites. Many of the traits are things you already know about yourself, like whether you prefer sweet or salty foods or the fact that bright sunlight makes you sneeze.
Nor will many traits come as a surprise to family and friends. You don’t need to tell my wife, for example, that I have “a weaker tendency for having acute hearing ability”. Nor does she have to take a test for me to know she suffers from misophonia (hatred of particular sounds, such as chewing).
The fact that most people will find traits revealed by DNA tests are accurate, if unremarkable, has led them to splash out hundreds of dollars for other tests of dubious value. According to Sergio Pistoi, molecular biologist and author of DNA Nation, “Tests that offer to find your perfect sexual match and those claiming to predict personality, talents or sexual preferences based on your DNA are just snake oil. At the moment, the scientific bases for these applications are nonexistent or incredibly weak. Then there is a range of borderline applications, like deep ancestry, genetic diets and DNA skin care that are somewhat based on scientific research but whose results, when applied to a test, are not validated and often misleading.”
Consumer DNA testing has also opened up a big market for “discreet DNA testing”. There is a boom in paternity testing websites(for cuteness, you can’t go past UK-based Who’zTheDaddy?). EasyDNA will “help confirm suspicions about a cheating or unfaithful partner”. All you need to do is send in common items like hair, underwear, bed sheets, tissues or condoms.
But wouldn’t it be better to know if your
partner was likely to be unfaithful to you before it happened? Genetrack will provide the answers with its “female infidelity gene” AVPR1A test and “male pair-bonding” gene test. “Five genetic changes in the AVPR1A gene are associated with an increased likelihood of extrapair mating or cheating in women,” it claims. And a specific variant of the AVPR1A gene, known as the RS3 334 allele, is associated with diminished pairbonding in males. Of course, asking your spouse to swab the inside of their cheek may require an explanation, but fortunately, Covid provides the perfect cover.
MARKETING TOOL
DNA profiling is the hottest trend in marketing. It follows hard on the heels of “digital DNA” – the traces we leave every time we shop online or visit a website. That information is fed into algorithms to sell us everything from shoes to political conspiracies. Facebook, for example, knows I am a sucker for gadgets and is forever tempting me with everything from levitating bluetooth speakers to lightsaber chopsticks.
How much more effective marketers would be if they also had genetic data. Nestlé, the world’s largest food company, is already collecting DNA samples in Japan to target the country’s ageing population with personalised vitamin-fortified snacks, teas and smoothies.
DNA traits would be a goldmine for marketing. If you show a predisposition to male pattern baldness, you are the perfect target for hair-loss prevention products. The placebo response has also now been identified as a genetic trait. While that’s great news for scientists designing clinical trials, it would also be invaluable information for New Age charlatans and supplement hucksters.
Once you send your spit away, you lose control over your DNA. Most people just tick the box agreeing to complex and convoluted terms and conditions without bothering to read them. “One of the things about genetic information is that once you have the data processed, that data can be stored potentially indefinitely, and it is unlikely to change over time in a way that would make it non-identifiable information,” writes Andelka Phillips, author of Buying Your Self on the Internet and a University of Queensland researcher.
Customers’ DNA is routinely onsold to biotech and pharmaceutical companies and can be handed over with a court order. Since 2018, when Californian police were able to find and convict the Golden State serial killer by trawling through the public DNA database GEDmatch, law enforcement around the world, including New Zealand, has increasingly looked to use commercial DNA databases to identify crime suspects. Although most people would probably be happy if it was used to catch violent criminals, they would be less so if a future government sought to use it to identify political dissidents and demonstrators.
In Germany, the Nazis employed
“Tests that offer to find your perfect match or predict talents and sexual preferences are just snake oil.”
Back in 2001, if you wanted to go beyond consumer DNA testing and have your whole genome sequenced for a more accurate picture of your genetic health risks, the bill would have been US$100 million. The US National Human Genome Research Institute, which has been tracking the cost, now puts it at about US$400. For that, you get your personal “Book of Life” – three billion jumbled letters of the genetic alphabet ACGT (adenine, cytosine, guanine and thymine), a 700-megabyte file of data that fits on an old-school CD.
Until recently, efforts to decipher the human genome were as rewarding as five-year-olds reading War and Peace, but advances in computer science and artificial intelligence are starting to unlock some of its mysteries. Now, an increasing number of gene therapies are becoming available to cure rare diseases caused by a single genetic typo.
For the average person, though, the greatest benefit of the genetic revolution will be phamacogenetics. Getting a prescription from the doctor is currently hit and miss: the medication may not work or could have serious side effects. That’s because some people metabolise drugs differently depending on their genetic makeup. If your DNA is known, it can take the guesswork out of prescribing drugs. It would make healthcare cheaper and more efficient.
“We are rapidly approaching the day when we will enter a pharmacy or the doctor’s office with our DNA file and get a prescription that fits our genetic makeup,” writes Sergio Pistoi in DNA Nation. “In fact, most health systems already have an infrastructure that would support DNAtailored prescriptions without too many technical hurdles.”
Many advances have been made possible by CRISPR, a cheap and easy technology to edit DNA and turn genes on and off. How easy ? You can buy a DIY CRISPR kit on the internet. As biohacker Jo Zayner put it, “People having access to this technology allows them to do crazy and cool shit.”
On The ODIN website, Zayner sells CRISPR kits that allow you to “make precision genome edits in bacteria at home”. But, as New Scientist has pointed out, “That won’t stop anyone from following the instructions [Zayner] has laid out for how to edit the adult human genome. With The ODIN processing thousands of orders, it would be ridiculous to suggest that some of those orders aren’t being used for human experimentation.”
Genetically modified humans already exist. In 2018, He Jiankui, a Chinese scientist, used CRISPR to edit the DNA of three embryos to make them resistant to HIV, a disease their father had. The experiment resulted in the birth of healthy twins, Lulu and Nana, and another baby called Amy. Scientists around the world were outraged by what they saw as a reckless, unethical experiment, the long-term consequences of which were unknown.
But there was also the same vociferous opposition to in vitro fertilisation when it became a viable treatment for infertility in the 1970s, with one commentator describing “test tube babies” as “the biggest threat since the atom bomb”. It’s likely that gene editing made possible by technology such as CRISPR won’t be controversial for as long because of the obvious benefits: disease and pest eradication, anti-ageing interventions and crops that cope with climate change.
Scientists, though, worry that messing about with genes without knowing the long-term effects could be catastrophic, and most countries have banned heritable human gene editing.
But with CRISPR, the genetically modified horse has already bolted. As author Terry Pratchett sagely observed, “Some humans would do anything to see if it was possible to do it. If you put a large switch in some cave somewhere, with a sign on it saying ‘End-of-the-World Switch; PLEASE DO NOT TOUCH’, the paint wouldn’t even have time to dry.”
An increasing number of gene therapies are becoming available to cure rare diseases.
professional genealogists to track down Jews and non-Aryans. Totalitarian states today could achieve better and quicker results from the DNA on a cigarette butt or a discarded coffee cup.
In China, authorities are collecting DNA to track not only ethnic minorities such as Uyghur Muslims but also the general population. According to the New York Times, “The police in China are collecting blood samples from men and boys from across the country to build a genetic map of its roughly 700 million males, giving the authorities a powerful new tool for their emerging high-tech surveillance state.” It quotes China human rights researcher Maya Wang: “The ability of the authorities to discover who is most intimately related to whom, given the context of the punishment of entire families as a result of one person’s activism, is going to have a chilling effect on society as a whole.”
Fears that China is also harvesting DNA from Western countries to create bioweapons have prompted the US military to warn personnel against using consumer DNA kits.
HACKING RISK
It’s unlikely that New Zealanders will have to worry about state surveillance or bioweapons any time soon but there are more medium-term concerns when your DNA is stored. Globally, it’s estimated 30,000 websites are hacked every day. In 2018, hackers gained access to the data of more than 92 million users of the genealogy site MyHeritage. Though they were unable to steal users’ DNA, which is stored separately, it did highlight the vulnerability of these sites. Passwords, email addresses and bank details can all be changed after a break-in, but “you can never take back your DNA information once it has been exposed”, says Pistoi. “Like a diamond, your DNA is forever. Most of your genes won’t reveal much today, but they may be interpreted more precisely tomorrow and, possibly, reveal details that could be used against you.”
Another concern is the possibility of discrimination if you have discovered through DNA testing that you are prone to certain diseases. Insurance companies cannot compel you to take DNA tests, but they can and do ask you to disclose the results if you already have. Southern Cross and Sovereign ask new customers about any predisposition to a disease discovered through DNA testing, while Tower Insurance puts the onus on the customer to volunteer the information. Such information could result in higher premiums or a particular condition being excluded from a policy.
A JOB VETTING TOOL?
It’s also likely that as consumer DNA tests become more reliable predictors of disease and personal traits, employers will find ways to obtain and use that information to vet job applicants.(Was that coffee you were offered at the interview really a surreptitious way of getting your DNA ?) More than 70% of New Zealand employers already use social media accounts to vet prospective employees.
I am only one of the more than 30 million who have taken a consumer DNA test and exposed themselves to commercial manipulation, identity theft, discrimination, crime and risks that still remain unknown. And for what? In my case, only to find out what I already knew: that I am descended from a long line of illiterate peasants who scraped a living in rural Ireland. And that I have more than 19,000 distant relatives, none of whom I have any desire to contact.
And yet, there is something affecting about being affiliated in a small way with the genetic revolution, one of the greatest advances in scientific history. Of the 117 billion ordinary human beings who walked the Earth over the past 192,000 years there is hardly a trace. By spitting in a tube, my personal identity is preserved and out there. For better or worse. ▮
There are fears China is harvesting DNA from Western countries to create bioweapons.