Several medical techniques already used in other countries remain banned by the future law of bioethics, whose discussion in the National Assembly begins Tuesday, raising fears to some members and researchers that France "misses the mark of medical advances" important .
- Analyze the chromosomes of an embryo before implanting it
Common in other countries such as the United States, this technique consists, in the framework of medically assisted procreation (PMA), to verify that an embryo does not have a chromosomal anomaly before implanting it, in order to increase your chances of success.
Chromosomal abnormalities are often responsible for spontaneous miscarriages in early pregnancy.
Today, "the results of in vitro fertilization are not really up to our hopes," says reproductive specialist Rene Frydman, interviewed by AFP, referring to a rate of 60% failure, that one could reduce using this technique.
But for the Minister of Research Frédérique Vidal, it is too early to generalize this type of technique, which would take the step of sorting embryos.
"This is done through research programs, which question the impact (chromosomal abnormalities) on fertility issues," she said in an interview with AFP.
- Avoid transmitting a serious illness to your children
Preimplantation diagnosis (PGD) is currently reserved for couples who have already had a child seriously ill or died due to a genetic disease (cystic fibrosis, myopathy, cancer linked to a genetic factor ...).
It allows the selection of embryos not carrying this mutation - and only that one - to prevent the birth of a second child affected.
For the geneticist Pascal Pujol, how to justify that one can not, at the same time, detect trisomy, while the couple will be allowed to do it from the beginning of the pregnancy, as part of the prenatal diagnosis?
If the bill does not provide for the moment, Frederique Vidal has hinted an opening on this point, explaining that "the answer will come from the debate in Parliament."
Professor Pujol would also like to expand the indications of pre-conception tests, mentioning cystic fibrosis or spinal muscular atrophy, genetic diseases but for which there is "no family history in more than 90% of cases".
"There is a confusion" when ministers evoke a risk of "eugenic drift", he says, considering that to reserve this screening for clearly identified genes and "serious and incurable diseases" would constitute a "guardian". -fou "enough.
But "what is an incurable disease?", Insists Frederique Vidal, pointing out that those who are today will not necessarily be "in three years".
- Know if you have a high risk of developing cancer
Genetic tests to establish biological links are strictly forbidden in France, except judicial injunction, just like those to know its "ethnic" origins. As for those intended to establish predispositions to certain diseases, they are extremely supervised.
Thus, BRCA research, which affects one in 200 women and has a very high probability of developing breast or ovarian cancer, is reserved for women with a specific family history.
Should we continue to ban these tests from others who want to "know" if they have an increased risk of disease?
"We are in a world where we can have his entire genome sequenced (...) on the internet" while "it is strictly forbidden by law", observed Jean-François Delfraissy, president of the National Consultative Ethics Committee (CCNE), during the hearings on the draft law in the Assembly.
Deploring this intransigence "à la française", with a ban that is "unable to enforce", he recalled that the CCNE had advocated in his report a year ago "a possibility of openness (...) in a medicalized context and genetic counseling. "
A position shared by Pascal Pujol, who also warns about the unreliability of tests offered on the internet.
"We want to protect people, but we risk that the opposite happens," he told AFP.
These sites also pose the question of the storage abroad of such sensitive data, Arthur Kermalvezen tip, the first French born of a PMA with gift to have found his parent through genetic testing done on a US site.
"Our genome goes abroad," laments the creator of the association Origins, describing the attitude of the authorities as "puritan" when it comes to "vital information", especially for research.
- A law to be revised more often?
The texts provide that the bioethics law is reviewed every seven years. A delay already exceeded by the current bill since with a final vote hoped "before next summer", it will be nine years since the previous version.
In a field where knowledge is evolving very quickly, some people point to the risk of a law already "out of date" when it is promulgated and deplore the fact that it takes several years to legislate when an innovation appears.
CCNE advocated shortening this period to five years.
Jean-Louis Touraine (LREM), co-rapporteur of the draft law, also proposes to "create a permanent delegation" to the Assembly to signal "new necessities" on bioethical subjects.
But others, starting with the government, argue that the five-year deadline was the one provided for in the first bioethics law in 1994, and that it was never respected.
© 2019 AFP