The Senate Bioethics Committee had voted to introduce a new article into the Bioethics Act authorizing and framing genetic genealogy tests. The government opposed it, through the voice of Agnes Buzyn, Minister of Health at the time. The group Les Républicains du Sénat supported the government of the Republic En Marche by voting by majority against the framework of genetic genealogy tests. A look back at the arguments deployed, misinformation, off topics during these debates that will surprise you …
Why allow genetic genealogy tests in France?
Olivier Henno, rapporteur of the Committee on Bioethics in the Senate, presented his amendment calling for the authorisation and supervision of genetic genealogy tests in France. In his speech, he recalled that maintaining the ban on genetic genealogy tests was "virtual". The UDI senator recalled that by 2019, 150,000 French people had taken a genetic genealogy test, and that an estimated one million French people had entrusted their genetic data to foreign laboratories.
Olivier Henno reported the position of the Attorney General of the Court of Cassation who "confirmed the impossibility of banning. He suggested a pragmatic response. Instead of banning tests, let's frame them!"
The arguments of Agnes Buzyn, Minister of Health
The government of the Republic in March, a political group supposedly at odds with the "old" parties, opposed the legalization of genetic genealogy tests by recalling the principle of French law, namely that only genetic testing for medical or judicial purposes is allowed.
I transcribed below almost the entirety of his speech to justify 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 that is why we demand that these genetic genealogy tests be regulated by French law, to ensure that the confidentiality of data and our privacy are well guaranteed and supervised!
If we follow the minister's logic, there is a risk of data misappropriation, so we must not control that data! By framing genetic genealogy tests, the legislature could precisely control the general conditions for the sale of these tests and the use of these 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 leads to sometimes unexpected results especially when the research concerns people born of gamete donations or born under X. The family members concerned are not necessarily consenting or even informed."
The Minister of Health voluntarily fails to specify that people born of gamete donations or born under X have the right to know their biological parents. This is the Right to Origins! If our citizens turn to genetic genealogy tests, it is because of the failure of the French government to meet its obligations.
Births under X, the sad specificity of the French law doomed to be abolished, represent 600 births per year (see the arguments detailed in this excellent article of Le Monde). Gamete donation was 1,307 babies in 2011, an increase in numbers.
Therefore, it can be estimated that this affects 2,000 people a year, to whom the legislation gives the right to know their parents, and to whom the government wants to maintain the prohibition of identifying their biological parents!
So, in the logic of the government, since we want to prevent every year 2000 people who have the right to, to identify their biological parents, we forbid 148,000 people to want to do genetic genealogy!
"These tests can be hijacked for paternity research."
In addition, already before the National Assembly, Agnes Buzyn said on 4 October 2019:
"Imagine that all members of the same family send their DNA: this would cause many nasty surprises – which already happen 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 Minister of Health. I invite you again to consult a well-documented article from Le Monde on the subject.And this includes cases of adulterous children, but also of hidden adoptions, exchange of babies at the maternity ward, etc. For our genealogists, we have a one-in-two chance that one of our 256 direct ancestors is not one of our direct ancestors.
Our Canadian cousins, from French couples, having 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 section "FACT CHECKING" to denounce these false figures and anxious statements of the government, MPs, senators but also of the press.
A reminder of what a paternity test is: forcing a natural father to recognize a generally minor child by comparing their two DNAs.
A genetic genealogy test is carried out voluntarily by adults.
Indeed, genetic genealogy techniques can eventually trace the identity of a person who has not been tested. This is why the association DNA PASS had made proposals on the options of confidentiality of accounts and in particular the display of family trees in order to achieve a balance between guaranteeing the individual rights of each.
By incorporating them into the law, these amendments would have imposed themselves on foreign laboratories.
"The Council of State, in its 2018 study on bioethics, believed that the prohibition on insurance would be threatened with the trivialization of the dissemination of these practices. We must empower professionals and consumers, and preserve the French bioethical model."
The Minister of Health still confuses genetic genealogy tests with medical genetic tests. I will not comment on the subject, having already devoted a long article on it on which you refer the link above. There is no risk at the medical genetic level, an additional spurious argument.
My article could be 20 pages long to detail all the fallacious arguments used, so I refer you to the entire speech of Agnes Buzyn, our former Minister of Health. If you would like clarification on these arguments, I will always be happy to respond to them in the comments under this article.
Republicans, representatives of an old world ending
This title, alas, clearly defines the content of the debates on genetic genealogy tests opposed by Senators Les Républicains, notably through the voice of Bruno Retailleau announcing at 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 a eugenic drift. Finally, the way is increasingly paved the way for financial logic. Let's set limits! France must not do this because its neighbours do it…"
This last sentence was applauded by the entire Republican group.
Eugenic drift? By authorizing genetic genealogy tests? But did senators even understand what genetic genealogy tests are? Would the French government pave the way for a eugenic drift? Practiced for 18 years in the United States, and in the majority of countries around the world, what eugenic drift has been possible?
But the term is scary, especially associated with genetics. The mere fact of uttering these words leads to the support of everyone, myself included. But it just has nothing to do with the legalization of genetic genealogy tests! Senator, honourable senators who have applauded, you are "next to the plate."
The Republicans and the government of the Republic on the Move have sanctified the genetic data. That companies, by definition commercial, sell tests for genetic genealogy purposes bristles at them.
Let's go back to a very objective vision: a company offers a service that I want to benefit from. This company makes me pay for this service and benefits from it. If all commercial activities are to be banned! Well, I'm not in bad faith, I understand that the issue is genetic data and its exploitation.
Republicans do not want any genetic analysis other than those performed for medical or legal purposes, thus 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 citizens predominates among the policies governing us?
This genetic information, sensitive personal data, should not be entrusted to its holder. Clearly, I, you, do not have the right to know our genetic information. Only medical professionals can access it because they have the required level of knowledge. We are therefore children protected from unnecessary or even dangerous knowledge about 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 our family tree.
This is nothing more or less than a paternalistic vision, worthy of the 19th century, already mentioned in my article on Saying or not saying medical genetic risks.
We are therefore uneducated citizens, unable to understand the risks and must be protected from ourselves, under the tutelage of doctors like Agnes Buzyn. In 2020, we French citizens are not able to understand the issues, to inform us, to educate ourselves on genetics.
Our European neighbours, apart from Poland, felt that their citizens had sufficient judgment to allow them to access their ethnic data and genetic cousins. But the French Republic will not follow their example! We will remain Gauls, in our village, keeping at a distance technological advances, new knowledge, dangerous because new … Our politicians feel 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 the citizens expressed in the most dazzling of ways, between "elites" who consider themselves superior to "children" citizens. These politicians use false, erroneous, misleading arguments to justify their position.
And our politicians despise the French, the 1.5 million French who have already carried out a genetic genealogy test abroad, and the 150,000 French people continue to do so every year.
I would repeat the wise words of Senator Olivier Henno of the Centrist Union group:
"Does banning on principle, without really knowing to prohibit, make sense? Is it better not to frame? Isn't that French bioethics: framing, humanizing rather than banning?
The Special Committee has taken its responsibilities and laid the foundations for strict supervision of genetic examinations for genealogical purposes by prohibiting the transmission of medical information and by introducing safeguards in the processing of data as sensitive as genetic information."
What a pity that we still suffer the politicians of the old world.