PARIS — From scanning her resume, you’d never guess Nathalie Jovanovic-Floricourt was an expert enabler of criminal activity. For years, she’d fretted over photo quality and page layout for publishing houses. Since 2007, she’s worked in communications for a bank — hardly a bastion of activist law-breakers. She lives in a quiet town an hour’s train ride away from Paris.
Then again, her underworld of choice is more socially acceptable than most: Jovanovic-Floricourt is a self-styled fixer for black-market genetic tests. She’s not a dealer. She doesn’t import spit-in-a-cup kits on anyone else’s behalf. She’s just tried out a bunch of different companies for herself — ordering them to an American package forwarding firm, say, if the manufacturer won’t ship directly to France — and helped others to do the same through talks, salons, books, and blog posts. Often, she says, fellow genealogists come to her with questions about their results.
“In doing these genetic ancestry tests, we’re risking a fine of 3,750 euros” — about $4,140 — “at least in theory,” she said one afternoon in late October. “But nobody has ever actually been fined. For years, I’ve been demanding to be condemned, so I can take the case before the European Court of Justice. France can’t forbid me from knowing my own DNA.”
The French ban on direct-to-consumer genetic testing is part of the country’s bioethics laws, which legislators are supposed to revise every seven years. When those discussions got underway earlier this year, some geneticists expected the National Assembly to relax the rules about commercial DNA analysis. It didn’t. Now, Jovanovic-Floricourt and the other genetics enthusiasts in her education and advocacy group, DNA Pass, are agitating more and more to get some of these tests legalized, contacting lawmakers, chatting up scientists, promising a more vociferous campaign than they’ve waged before.
But as one of the most vocal pro-legalization advocates, Jovanovic-Floricourt may have found her match in geneticist Guillaume Vogt and his bioethicist postdoc Henri-Corto Stoeklé. Theirs is an unusual standoff, in that they’re all motivated by the same ideas. Both sides hope to protect French genomes from exploitation by foreign companies. Both sides believe that French institutions are the best guardians for the job. They just disagree about how, exactly, to realize that vision. As Vogt, a scientist at the National Center for Human Genomics Research, put it, “Don’t change the law!”
It’s hard to know who should control what you do with your genome. Your DNA is at once distinctly yours and substantially shared with your family, at once deeply intimate and easy to leave lying around. It has both the appeal of a biological horoscope and a complexity that geneticists are still trying to unpack — not necessarily the kind of thing you should probe without the guidance of a professional.
That, at least, is how Western governments feel when it comes to health-related genetic tests. Plenty of countries have regulations in place for tests that provide medical information, and are especially wary when a physician isn’t involved. Many, including the United States, are more lax on the ancestry front.
What sets France apart from most places is not only that all such tests are banned, but also that the criminal code penalizes users. A doctor can lawfully order a genetic test in the course of providing care. A research participant can provide a genetic sample for scientists to answer a specific question. A judge can order a paternity test; the police and the military can use genetic evidence in certain situations. But buying a spit-in-a-cup kit without that kind of state-granted authority could theoretically warrant the fine that Jovanovic-Floricourt has been clamoring for.
“These tests can be dangerous. They can induce needless panic,” explained Christian Dina, a geneticist at the University of Nantes, who specified that he isn’t necessarily against the use of these kits but understands the need for prudence. “They can, in this country of Molière, create imaginary invalids.”
The worry is widespread. When a commercial kit reports your probability of getting a specific disease, it isn’t always trustworthy. Sometimes, the population-wide risk is so tiny to begin with that an “increased risk” for an individual doesn’t mean much.
That’s why Jovanovic-Floricourt is adamant that you shouldn’t be able to order medical genetic tests for yourself, but just genealogical ones. Her fascination with her family history started in her late teens, and she’s been sifting through documents and fact-checking family legends ever since. She did her first 23andMe test in 2008, and to her, the genome is an indispensable tool for understanding yourself and your past. “Recreational genetic tests — I hate that term,” she said. “It’s debasing, it’s pejorative. Wanting to know about one’s origins is not collecting stamps.”
But even legalizing genealogical tests raises questions. “We consider that your body belongs to you, but you’re not its owner,” said Stoeklé. “You don’t retain the right to sell it.” So giving genetic information away to companies that could then sell it doesn’t fit into that framework as easily in does into the American way of thinking, in which personal freedom often comes first.
As Evelyne Heyer, who leads genetic anthropology research at Paris’ Museum of Mankind, explained, those bodily data carry a dark possibility of being used for discrimination, and members of the public aren’t always aware of what they’re consenting to. “When people give their data to these companies, they don’t really realize whom they’re giving their data to and what they’re being used for,” she said.
Then again, an all-out ban on home genetic testing carries its own side effects. Not only does it mean that people simply take these tests illegally with no regulation whatsoever. Some say France has, for a number of different reasons, fallen behind when it comes to genomics. The government has a catch-up plan, with the intent of integrating DNA sequencing more thoroughly into the health system by 2025.
“There’s a risk that France might be giving the message that we shouldn’t touch the genome at all, and that’s not good. It’s excessive,” said Dr. Stanislas Lyonnet, director of the Imagine Institute for Genetic Diseases, in Paris. “We shouldn’t consider it a sin. We don’t want our prudence to turn into distrust, into fear. We’re not afraid of genetics! We use it every day.”
Vogt and Stoeklé’s answer lies in a metaphor. They see a country’s genetic data as a kind of natural resource — DNA as oil deposit. To them, it makes no sense to let foreign companies come in and exploit what they view as a national treasure. If the law were to change right now, Vogt said, companies like 23andMe would swoop in and strengthen their hold on the country’s genetic-testing market: “They will suck everything there is to be sucked out of France in the time it takes a Frenchman to get permission to start a company and start collecting data.”
The issue they see is one often raised by developing nations. Chances are, they say, whatever boons emerge from the use of all those biological details will go first and foremost to the company — and the country where it’s based. As Stoeklé put it, “The scientific and economic value of those data is not coming back to the society that generated it. There’s the problem.”
The duo knows there’s demand for these tests in France. In 2018, when the French genealogy website Geneanet sent out a survey to its users, some 20,000 responded, with 56% hankering after DNA tests and a little under 5% saying they’d already done one illegally.
Vogt and Stoeklé also see French researchers using 23andMe data to look for clues about everything from autism to thrombosis to earlobe attachment.
Given the public’s demand for genetic self-knowledge and the scientific community’s desire for genetic data, the two researchers hope to fulfill one with the other. They envision a network of genetic databases run by French research institutes, which will recruit participants for biomedical research on all sorts of subjects and give them, for free, the kind of DNA analysis they want in return.
That way, Vogt argues, the public will get trustworthy reports about their DNA — “who gets told they’re Breton won’t change every month,” he said. With every new study, participants will get an email explaining the purpose and asking for consent, so they know exactly how their data are being used. Researchers will get the biological details they need. Citizens will have expert guidance when trying to understand their own genomes. He’s fond of saying it will be “like 23andMe, but better.”
A 23andMe spokeswoman told STAT that the company takes “a number of steps to make sure customers are aware of what they can learn before they open their disease risk reports.” When asked about ancestry tests, she wrote, “For more recent ancestral locations, we look for identical pieces of DNA that you have in common with individuals of known ancestry from around the world. Reference populations for recent ancestor locations are comprised of over 330,000 customers (who have consented to participate in research), and this number will continue to grow as our customer database expands.”
Vogt and Stoeklé’s idea is an ambitious one, and would need lots of buy-in to work. Even then, it’s not clear how well this kind of network would fare against well-established companies. The team is now trying to drum up support through conversations with other researchers, scientific articles, and newspaper op-eds.
Jovanovic-Floricourt, for one, is not convinced. To her, the idea only increases the confusion between medical tests and genealogical ones.
Her vision isn’t so different from the one espoused by advocates for legal pot. Rather than keeping the law in place while Vogt tries to realize his vision, she says, legislators should legalize some of these tests so they can make sure that French citizens’ health information stays safe. “What’s most important to me is the protection of data,” she said. “Genetic data contain medical information about a whole family, and they’re being sent overseas without the National Commission for Information Technology and Civil Liberties checking that they’re not being misused. As long as these tests are not authorized and regulated by French authorities, then we can’t have any certainty.”
The debaters all agree that the ban will certainly change at some point. For now, the rule is simply there, largely unenforced. If a Parisian illicitly spits in a cup, does it make a sound?
Incredible that a country that prides itself on liberty can be so illiberal. In a civilized society a man has the right to know if the child said to be his is that and not a cuckoo in the nest.
Here in the states, it is also becoming more popular for men to use these tests to make sure they are the father of the child, discreetly without getting a court ordered test, just for a little piece of mind. I would encourage anyone to.
Another king of an illegal activity of a state – the state has no right to protect a grown, mentally capable citizen from himself.
Banning something just because it might be misused or misunderstood is deeply illiberal and patronizing. On those grounds they should ban driving or drinking wine, since it can cause damage to self and others. But this ban on genetic testing is worse, they are actually stopping potential scientific research and the right to individuals to own their own biological information.
The French goverment is absolutely correct in keeping commercial companies from setting yp any business on genetic medical information. Countless people in the U.S. have been needlessly panicked about not just the occasional innacurate genetic information, but about genetic information that must be put in the context of an experienced medical professional to appreciate it.
Yet more proof, as if any were needed, that there is no place for Government in scientific research or in business. While they stand dithering and running in circles, the field moves merrily along with no French participation. Bad for France, and bad for the scientific world.
What about people with French ancestry who have migrated to countries which allow DNA testing for genealogical purposes?? French-Canadians would LOVE to know the exact spot in France where their original ancestors came from…
Those people would still be able to find out edge in France their family came from. They just wouldn’t be able to connect with unknown relatives currently living in France.
Where, not edge.*
In a very recent TV show (nov 2019), on the French M6 TV channel, it was reported that more than 100,000 French citizen had a DNA test for genetic ancestry testing. I think this is underestimated as I had this number back almost 10 years ago.
While this is needed, to hear different voices for genetic testing in France, I think that Vogt and Stoeklé are still wrong, by again and again reporting that they “hope to protect French genomes from exploitation by foreign companies”.
Find the book The French DNA to better understand how wrong they are.
It is a misunderstanding of the power of genomics, as well of the business models of genomics, trying to protect the French genomes.
Precision medicine research require more diversity in genomics, needs to be global, not local. How can you help research for precision medicine at a global level, if you don’t want to share the French genomes with the big pharma, which basically except for Sanofi, is based in foreign countries? It means also that if France adopt this positioning, well, they won’t access genomes from outside. Ridiculous.
The decision to share your genome should not rely on Mr Vogt and Mr Stoeklé wishes, this belongs to the French citizen. Period.
Also, whatever they are called HIPAA, CLIA or RGPD, current regulations allow patients to access/download their clinical data. Same with genomic data. So whatever Mr Vogt and Mr Stoeklé decide in the future, their customers will be able to download their data and share international’s with the industry if they decide to. Something you can do with 23andMe for example, that everyone should be encouraged to, to put their data in an another marketplace.
And not to be forgotten, the French will probably put their genomics into blockchain, to put their data onto a bigger and global market, years before the French realize genomics is already a multibillion dollars industry that brings 0€ to France.
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