The Senate Bioethics Committee voted to introduce a new article into the Bioethics Act authorising, and providing a legal framework for, genetic genealogy tests. The government's opposition to it was voiced by Agnes Buzyn, Health Minister at the time. The Republicans (LR) group in the Senate supported The Republic on the Move (LREM) government by voting against regulating genetic genealogy testing. Here is a look back at the surprising arguments deployed, misinformation, and off-topic points made during these debates.
Why allow genetic genealogy tests in France?
Olivier Henno, the Senate Bioethics Committee's rapporteur, presented his amendment calling for the authorisation and supervision of genetic genealogy tests in France. In his speech, he made the point that maintaining the ban on genetic genealogy testing "would be to ignore reality." The UDI senator recalled that in 2019, 150,000 French people took a genetic genealogy test, and that it is estimated that more than one million have entrusted their genetic data to foreign laboratories.
Olivier Henno relayed the position of the Attorney General of the Court of Cassation who "confirmed that a ban was impossible. He suggested a pragmatic response. Instead of banning tests, let's regulate them!"
The arguments of Agnes Buzyn, Health Minister
The LREM government, a political group supposedly at odds with the "old" parties, opposed the legalisation of genetic genealogy tests by recalling a principle of French law, namely that only genetic testing for medical or judicial purposes is allowed.
I have transcribed below extracts from her speech justifying the ban on genetic genealogy tests.
"They are sometimes used for commercial purposes. In this context, we are not sure that they respect the confidentiality of the data, nor the privacy of the people tested and their entourage."
But this is why we are calling for genetic genealogy tests to be regulated by French law. To ensure that data confidentiality and our privacy are guaranteed and monitored!
If we follow the minister's logic, there is a risk of data misappropriation so we must not control that data! By regulating genetic genealogy tests, the legislature could closely control the terms and conditions for these tests and the use of data.
"The terms and conditions of sale lack clarity on these points. Some companies offer customers an option to search for people genetically close to them within their database. This somtimes leads to unexpected results, especially when the research concerns people born through sperm donation or anonymously. The family members concerned do not necessarily consent and are not always informed."
The Health Minister deliberately fails to specify that people born through sperm donation or born anonymously have the right to know their biological parents. This is the right to know your origins (a French legal right). If our citizens turn to genetic genealogy tests, it is because of the French government's failure to meet its obligations.
Anonymous births, a sad specificity of French law doomed to be abolished, represent 600 births a year (see the arguments detailed in this excellent Le Monde article). In 2011, 1,307 babies were born through sperm donation , figures which are increasing.
It can therefore be estimated that this affects 2,000 people a year, whom the legislation gives the right to know their parents, but whom the government wants to continue to prohibit identifying their biological parents!
So, according to the government's logic, since every year we want to prevent 2000 people identifying their biological parents, something they have the right to do, we forbid 148,000 people from practicing genetic genealogy!
"These tests can be hijacked for paternity research."
Moreover, on 4 October 2019, Agnes Buzyn said before the National Assembly:
"Imagine that every member of the same family send in their DNA: this would cause many nasty surprises – which is already happening since 15% of French people do not have the biological father they think they have."
The official figures for non-filiative events are in the order of 1% in Europe and not 15% as theatrically announced by the Health Minister. I invite you again to consult a well-documented article from Le Monde on the subject. And this includes cases of children born through adulterous relationships, but also of hidden adoptions, babies mistakenly swapped in the maternity ward, etc. For genealogists, we have a one-in-two chance that one of our 256 direct ancestors is not actually one of our direct ancestors.
For our Canadian cousins, who come from French stock and who have studied the subject for 18 years, with 8,500 living participants today, non-filiative events make up 0.5%!
The association DNA PASS will create a "FACT CHECKING" section to denounce these false figures and anxiety-provoking statements made by the government, MPs, senators and also the press.
A reminder of what a paternity test is: obliging, through a judicial ruling, a father to recognize a child, usually a minor, by comparing their DNA.
A genetic genealogy test is carried out voluntarily by adults.
It is true that the identity of a person who has not been tested can eventually be traced using genetic genealogy techniques. This is why the association DNA PASS had made proposals regarding account confidentiality options and in particular the display of family trees, in order to guarantee the individual rights of everyone.
By incorporating them into the law, foreign laboratories would have to comply with these amendments.
"The Council of State, in its 2018 study on bioethics, considered that that the ban on insurance companies accessing genetic information would be threatened by the generalised spread of these practices. We must make professionals and consumers aware of their responsibilities, and preserve the French bioethical model."
The Health Minister still confuses genetic genealogy tests with medical genetic tests. I will not comment on the subject, having already devoted a long article to it which you can read by clicking on the above link. There is no risk on a medical-genetic level, another spurious argument.
In order to detail all the fallacious arguments used my article would risk being 20 pages long, so I refer you to our former Health Minister, Agnes Buzyn's, entire speech. If you would like clarification on these arguments, I will always be happy to respond to questions in the comments section under this article.
The Republicans, representatives of an old world that is coming to an end.
This title, alas, clearly defines the content of the debates on genetic genealogy testing to which LR senators are opposed, notably through the voice of Bruno Retailleau, announcing from the outset:
"Who can be against genealogical research? But there are commercial aims here! The name is misleading. These tests should only be allowed for medical or legal purposes."
Bruno Retailleau adds as his second argument:
"the risk of drifting towards eugenics. Ultimately, we are paving the way for further commodification. Let's set limits! France must not do this just because its neighbours do it…"
This last sentence was applauded by the entire LR group.
A drift towards eugenics? By authorising genetic genealogy tests? But do senators even understand what genetic genealogy tests are? Would the French government pave the way for a drift towards eugenics? Practiced for 18 years in the United States, and in the majority of countries around the world, what eugenic drift has taken place?
But the term is scary, especially when associated with genetics. By merely uttering these words you win the support of everyone, myself included. But it has absolutely nothing to do with the legalisation of genetic genealogy tests! Senator, honourable senators who applauded, you are completely missing the point.
The Republicans and the LREM government have ringfenced genetic data. That companies, by definition commercial organisations, sell tests for genetic genealogy purposes makes their hackles rise.
Let's be as objective as possible: a company offers a service that I want to benefit from. This company makes me pay for this service and benefits from it. Should all commercial activities then be banned! Well, I'm not being insincere, I understand that the issue is genetic data and its exploitation.
The Republicans do not want any genetic analysis other than that performed for medical or legal purposes, therefore managed by doctors and the judiciary. This means that individuals do not have the right to access their genetic information directly.
This is the real topic of the debate. What vision of society and citizenship predominates among the politicians governing us?
That this genetic information, sensitive personal data, should not be entrusted to its holder. Clearly, you and I do not have the right to know our genetic data. Only medical professionals can access it because they have the required level of knowledge. We are therefore like children, protected from unnecessary or even dangerous knowledge that concerns us.
I remind you that the "highly dangerous" knowledge in question concerns our ethnic origins and the identification of our genetic cousins in order to complete a family tree.
This is nothing less than a paternalistic vision, worthy of the 19th century, already mentioned in my article Should we be open about medical-genetic risks?
We are therefore seen as uneducated citizens, unable to understand the risks and so must be protected from ourselves, under the tutelage of doctors like Agnes Buzyn. In 2020, French citizens are not considered capable of understanding the issues, of informing themselves, of educating themselves about genetics.
Our European neighbours, apart from Poland, felt that their citizens had sufficient judgment to allow them to access their ethnic data and genetic cousin lists. But the French Republic will not follow their example! We will remain Gauls, in our village, keeping technological advances at a distance and new knowledge, dangerous because it is new, at a distance… Our politicians believe they are more responsible than all the other politicians in the European Union, more responsible than any of us.
This is the rupture between the political world and citizens expressed in the most resounding way, between "elites" who consider themselves superior to "childlike" citizens. These politicians use false, erroneous and misleading arguments to justify their position.
And our politicians treat the French with contempt, the 1.5 million French people who have already carried out a genetic genealogy test abroad, and the 150,000 who continue to do so every year.
I will repeat the wise words of Senator Olivier Henno of the Centrist Union group:
"Does banning on principle, without really knowing how to prohibit, make sense? Is it not better to regulate? Isn't this what French bioethics should be: regulating, humanising rather than banning?
The Special Committee has taken responsibility and laid the foundations for the strict supervision of genetic examinations for genealogical purposes by prohibiting the transmission of medical information and by introducing safeguards for processing sensitive genetic data."
What a pity that we still have to suffer the old-world politicians.