Bioethics law tested by DNA testing

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Bioethics law tested by DNA testing





© Andrew Brookes


More and more French people wishing to know their origins are resorting to genetic tests, prohibited in France without the authorization of a judge or medical prescription, via foreign companies. It is urgent to supervise this practice.

Grandstand. “In life nothing is to be feared, everything is to be understood.” (Marie Curie). Each year, 100,000 to 200,000 French people order a genetic test marketed directly by foreign companies on the Internet, such as FamilyTreeDNA or 23andme in the United States and MyHeritage in Israel. These so-called origin, ancestry or genealogical tests allow those who wish to know their geographic or even regional origins. In addition, they link the DNA of people with a common genetic line if they have consented to this type of comparison between users of the same service.

So, without moving from his living room, a Frenchman conceived by PMA was able, for 100 euros, to find a London genetic cousin who had done the same test as him ten years earlier. Surprise! She was from the family of his sperm donor (anonymous in France) whom he had been looking for for thirty-five years. This DNA correspondence with an unknown woman coupled with some genealogical research enabled him to find the man who gave him life and then to meet him (1). Following him and thanks to the genetic genealogy, many adopted people, conceived by PMA or born under X also succeeded in reweaving the broken link up to their parents. Many people have used this test for various purposes, to check if there were indeed Italian origins in the family or to resolve blockages in their family tree.

In search of truth

Should we be concerned and prohibit these direct access DNA tests? In France, the penal code already sanctions, in theory, a fine of 3,750 euros for the examination of genetic characteristics without the authorization of a judge or prescription for medical purposes. But, in the age of the Internet, this ban has shown its limits while these tests are authorized in all neighboring countries. Critics of these tests invoke the alleged risks linked to the revelation of possible illegitimate filiations. How would France be an exception? Can we reasonably continue to oppose the right of millions of people looking for their origins when it has been established by the work of Maarten Larmuseau (2) of the Catholic University of Louvain (KUL) that the rate of false paternity was only 0.9% per generation? Authorized or not, more and more French people are taking these tests.

Refusing to regulate this booming practice (3) is refusing to hear our fellow citizens looking for the truth, offering them the only alternative to circumvent the law. It is mainly to let foreign countries develop DNA databases without having the slightest control over this activity. When you know that one of the three biggest DNA companies (23andme) resold the genetic data of its customers to several pharmaceutical laboratories (Pfizer in 2015, Glaxosmithkline in 2018) and that the American police now have the right to inspect the DNA correspondence of users of another site (GEDmatch), we understand the urgency for the French legislator to propose a protective framework.

The winning ticket for the “made in France” test

Over 80% of French people under 40 (4) are in favor of legalizing these “genealogical tests” improperly qualified as “recreational”, and 85% of those surveyed consider it very important that they be carried out by a company based in Europe and subject to European data protection regulations.

A clarification of the different uses likely to develop from this genomic data is also imperative. It would be advisable to distinguish the tests for research purposes from the origins of those having a scientific purpose (by proposing to the users to participate in a research program notably based on a questionnaire like for example the E-CohortE or medical methodology (intended to identify a specific disease or giving indications of a possible predisposition to the development of certain pathologies. In the latter case, the accompaniment of users by a qualified professional must be compulsory. Informed consent would be required for each analysis.

It is not a question of modifying the current framework of the tests authorized by a judge, prescribed by a doctor or carried out within the framework of a scientific research but only to legalize “French-style” or, at a minimum, decriminalize this new purpose of DNA analysis: the search for origins. It would be all the more beneficial if, thanks to them, everyone discovered that they were citizens of the world, from a mixture. This plurality of origins is an extraordinary openness to the world and a formidable snub to racism.

(1) A. Kermalvezen and C. Rotman, The son, ed. The Iconoclast.

(2) Cuckolded Fathers Rare in Human Populations, M. H. D. Larmuseau and Trends in Ecology & Evolution.

(3) In the United States, when Black friday in 2018, over a weekend 1.5 million DNA kits were sold by the American company AncestryDNA (J. Bellon Socio-economic, legal and ethical issues of the commercialization of personal genetic tests, ESCP Europe Business School 2018/2019).

(4) Geneanet survey conducted from May 19 to 31, 2018 on more than 20,000 people.

Signatories: Marie-Françoise Colombani, journalist, screenwriter and author of novels and interviews, Coralie Dubost, MP, co-rapporteur of the bioethics bill, Muriel Flis-Trèves, psychiatrist-psychoanalyst, Philippe Froguel, geneticist, Alix Girod de l’Ain, writer, journalist and screenwriter, Serge Hefez, psychiatrist-psychoanalyst, Gustave Kervern, director, Laurent Laffont, editor, Aissa Maiga, actress, Maurice Mimoun, head of plastic and restorative surgery department and writer, Pascal Neveu, psychoanalyst, Israel Nisand, obstetrician-gynecologist and founder of the European Bioethics Forum, Nonce Paolini, ex-CEO of TF1, Natalia Pouzyreff, MP, Olivier Rousteing, artistic director at Balmain, Fabienne Servan-Schreiber, producer, Jean-Louis Touraine, deputy, co-rapporteur of the bioethics bill, Stéphane Viville, specialist in infertility genetics. Complete list of signatories available on www.associationorigines.com

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