by Alliance VITA | February 5, 2021 | End of life, News, Palliative care
Five years after the Claeys-Leonetti Act of February 2, 2016 was enacted, the National Centre for Palliative and End of Life Care (“CNSPFV”) conducted a poll.
In January 2021, the BVA Institute conducted a survey over the phone using a sample of 902 French citizens of age 50 and over, considered representative of this population.
The opinion poll revealed that individuals are better acquainted with the law’s implications: 48% are familiar with advance directives and 72% know what the Durable Medical Power of Attorney is.
The “CNSPFV” Director, Brahim Bouselmi, wonders if the recent increase in the number of advance directives could be due to a “Covid effect”: 18% of the individuals surveyed have now drafted their wishes (up from 11% in 2018 and 13% in 2019). The poll demonstrated that almost one in five French citizens admitted that the pandemic incited them to think about the end of their life. Nonetheless, it is not easy to write one’s advance directives and there is still much reluctance: 54% of those responding simply have no desire to write them.
The most popular aspect is designating one’s Medical Power of Attorney: 73% of those who are familiar with advance directives have already designated someone or are considering doing so.
According to the survey, the favorite way of communicating their wishes is oral (61% vs. 34%). Discussions with their loved ones are clearly privileged (57%) compared to writing advance directives or discussing the subject with caregivers.
In October 2020, the “CNSPFV” carried out workshops to develop new ways to facilitate citizens’ understanding and to help them draft advance directives. It is vital that the citizens’ understanding of the provisions of the Claeys-Leonetti law be incorporated in the future plan for developing palliative and end-of-life care.
Alliance VITA has published a guide for Advance Directives which can either be downloaded or ordered online from our web site. The SOS End of Life listening service is also available for support and to assist in drafting one’s advance directives.
by Alliance VITA | February 5, 2021 | News, Bioethics, Bioethics Law
At the 2nd reading of the French bioethics bill, the Senate made significant modifications, removing several clauses which had provoked strong public dissent.
- Article 1, allowing ART without any medical reason for couples of women or any single woman, was finally rejected, and this shows the obvious divergent viewpoints. This provision, which is unfair and discriminating against children, would have introduced the “right to a child” even if it meant depriving the child of a paternal bond, and possibly denying him any filiation whatsoever, in the case of double gamete donations.
- The senators maintained the ban on manufacturing animal-human chimeras and transgenic human embryos, thereby acknowledging that red lines exist and cannot be violated with impunity. We must keep in mind that respecting the integrity of the human species is the centerpiece of human ecology.
- The clause allowing healthy babies to be aborted up until the date of birth, by using the vague and unverifiable criterion of “psychosocial distress”, was revoked after being overwhelmingly criticized by prominent figures of all political parties who were shocked and compared this violence to an infanticide.
The many contradictory clauses alternatively adopted by the Senate and the National Assembly over the first and second readings of the text bring to light the intense controversies and grave injustice that this bill creates, far from the consensus initially promised by President Macron.
In their last vote, the senators have adopted a cutting-edge legislative standpoint, genuinely bioethical, focusing on ecological, environmental and human issues, which were fundamentally missing from the government’s initial bill.
Yet, there are still several disputable and incongruous issues in the latest version adopted by the Senate.
Key Measures Adopted
I – Senate Rejects Extending ART and Oocyte Auto-preservation (Articles 1- 4)
1) Refusing the “Right to a Child” (Articles 1 and 2)
At the 2nd reading, the Senate decided to prioritize the rights of a child over the right to a child. In the founding principles of the bill, the senators incorporated a clause which specifies that “the right to a child does not exist.”
Subsequently, the Senate rejected Article 1, which extended ART “to couples of women or to any unmarried woman,” together with the reimbursement of this procedure by Social Security. This article was overruled just when another amendment allowing post-mortem ART was inadvertently adopted.
Article 2, which provided for oocyte self-preservation without any medical reason, was also canceled.
Besides, the Senators, as at the 1st reading, crossed out section 2bis, which proposed to conduct a national program to fight infertility including research on and prevention of the causes of infertility, arguing that it is not a legislative matter. Moreover, an amendment calling for an infertility report was also rejected, whereas this clause could have led to proactive policies to prevent or restore fertility, which are currently non-existent.
2) A Confusing Revision of Articles 3 and 4
- Article 3 is dealing with the subject of lifting the anonymity for gamete donations. The initial draft which was approved by the National Assembly during the 2nd reading, stipulated that the donor had to reveal his identity if the child requested it when he reached age 18. Consistent with their decision at the 1st reading, the senators have insisted on keeping it a donor prerogative whether or not to disclose his identity upon the child’s request. As a result of this significant modification, the so-called lifting of anonymity will not have much impact. This hypocritical position is a ticking time bomb and extremely detrimental to the child.
- Oddly, although Article 1 regarding ART for female couples had been deleted, Article 4 was incongruously This article defines the rules for establishing parentage in the case of an ART made by a women couple. At both the 1st and 2nd readings, the National Assembly recognized both “women” as parents. The Senators rewrote this article and established that neither two maternal nor two paternal filiations for the same child is possible. A distinction is made between the woman who gives birth and who will automatically be considered as the child’s mother, and the other woman, who must file for adoption. Until this point adoption was reserved to married couples, but the Senate has extended adoption to unmarried couples who live together or who have signed a civil solidarity agreement (“PACS”), without any debate nor any impact study. And furthermore, the second partner would be granted the advantage of an accelerated procedure for the adoption.
- In Article 4bis, dealing with children born abroad from surrogacy, the Senate maintained the ban to transcribe foreign birth certificates onto the French civil registry. But astonishingly and incoherently, the transcription of adoption judgments is allowed, without even mentioning the injustice of this practice. It is to be reminded that in a recent case law, the Court of Cassation allowed the transcription for these birth certificates established abroad, in total disregard of the fact that surrogacy constitutes a fraud against French law.
II – Ever More Instrumentalizing Human Embryos as Research Material (Articles 14, 15, 16, 17)
1) Some Clauses Remain which Loosen The Rules on Embryo Research
In the latest version adopted by the Senate, articles 14-17 loosen the rules on human embryo research:
- The current draft maintains a 14-day deadline for embryo research, as was voted at the 2nd reading in the National Assembly. Until now, a deadline of 7 days had been strictly upheld. The increasing use of embryos as laboratory material puts the human embryo at risk of being used for commercial exploitation.
- The proposed bill also loosens the rules for performing research on human embryonic stem cells, compared to human embryo research protocols. Henceforth, this type of research would only necessitate filling out a simple declaration to inform the French Agency of Biomedecine, compared to requesting prior authorization for a research protocol before using embryos.
- Under the new bill, once the French Agency of Biomedecine is informed of the research protocol, artificial gametes could be manufactured from embryonic stem cells or reprogrammed stem cells, called induced pluripotent stem cells (iPS cells). Nonetheless, the bill specifies that any artificial gametes obtained from embryonic stem cells must not be fertilized.
2) The Senate Reintroduces Safeguards to Ensure the Respect of Human Integrity
The Senate amended several clauses that threatened the integrity of the human species:
- Although the National Assembly originally passed articles 14 and 15 that authorized manufacturing chimera embryos by inserting human embryonic stem cells or induced pluripotent stem cells (iPS) into animal embryos, these were both subsequently deleted by the Senate.
- In article 17, as at the 1st reading, the Senate maintained the ban on creating chimerical embryos and gave an explicit description of this practice. Any procedures to modify the genome of a human embryo or to create embryos for research purposes are specifically banned. Nonetheless, an amendment was adopted stating that this ban concerns embryos conceived “by the fusion of gametes”, without deciding whether or not embryos could be created using other methods.
III – More Prenatal Screening: The Senate Rejects the Controversial Measures (Articles 19, 20,21)
(1) The Most Controversial Measures Were Rejected by the Senate
At the 2nd reading, , the National Assembly surprisingly adopted in the middle of the night an amendment specifying “psychosocial distress” as a criterion for abortion until date of birth This misguided interpretation of the original statute that “pursuing pregnancy seriously jeopardizes the woman’s health” was deleted by the Senate as soon as it went to committee (Article 20).
The Senate did not reintroduce the PGD-A (Pre-implantation Genetic Diagnosis) to detect aneuploidies or chromosomal abnormalities in embryos prior to in vitro fertilization such as Down syndrome. This article (19ter) had originally been approved by the Senate bioethics committee at 1st reading but was ultimately rejected (Article 19ter). Already today, there are fewer than 200 Down syndrome babies born annually. Authorizing PGD-A would have inevitably opened the eugenic door even wider by screening for other non-hereditary, and thus unpredictable, criteria.
(2) Several Clauses to Amplify Prenatal Screening Got Senate Approval
Although the bill’s latest version avoids some eugenic transgressions, the Senate did approve other measures which could make prenatal screening practices worse.
- The Senate did not rescind the technique of the so-called “savior sibling”, which was reintroduced by the National Assembly at 2nd reading (Article 19 bis A). Authorized since 2004 “savior siblings” are produced using Pre-implantation Genetic Diagnosis (PGD) technique, combined matching HLA tissue types (PGD-HLA). The technique consists in two screening processes for embryos produced by in vitro fertilization. The first selects a healthy embryo without the sibling’s disease, and the second chooses embryos with genetically compatible HLA tissue types, for the purpose of using the healthy baby’s umbilical cord stem cells to treat a sick sibling. In 2nd reading at the National Assembly, this practice was reintroduced and extended by endorsing multiple in vitro fertilization attempts with subsequent double screening of embryos until an HLA compatible embryo can be manufactured.
- Article 20 abolishes the one-week period of reflection before abortion for medical reasons. The Senators rejected several amendments to reintroduce this cooling-off period.
Conclusion
After two readings in each assembly the disparity and conflicting views of both assemblies are obvious. At this point, the single wise course of action is for the government to withdraw this bill, instead of doggedly promoting these controversial issues that deeply divide French citizens.
![[Press Release]: The French Are Still Deeply Divided on Controversial Bioethics Bill](https://www.alliancevita.org/wp-content/uploads/2021/02/Senat.jpg)
by Alliance VITA | February 4, 2021 | Press Releases, Bioethics Law
Alliance VITA welcomes the vote of the bioethics bill by the Senate who left out the clauses provoking dissension and shattering bioethical boundary lines.
Refusing ART without any medical reason amply illustrates the divergent viewpoints about this provision which is unfair and discriminating against the children. This provision would have introduced the “right to a child” even if it meant depriving the child of a paternal bond, and possibly denying him any filiation whatsoever, if double gamete donations were allowed.
The senators maintained the ban on manufacturing animal-human chimeras and transgenic human embryos, thereby acknowledging that red lines exist and must not be violated with impunity. Respecting the integrity of the human species is at the heart of human ecology.
The clause to allow healthy babies to be aborted up until the date of birth, by using the vague and unverifiable criterion of “psychosocial distress”, was rejected. The appearance of this new criterion to allow abortion up to the moment of birth, which makes it very similar to an infanticide, has caused a great shock among prominent figures following very different political lines.
Caroline Roux, Alliance VITA’s Assistant General Delegate declares:
“This insightful revision of the bioethics bill is a most welcome piece of good news for Alliance VITA. It is only fair to reject ART without medical reason. The French are genuinely disturbed by this option which undermines the rights of the child. They are also especially mindful of the organic dangers inherent to manipulating living organisms, for example by manufacturing human-animal chimeras and genetically modified embryos. The senators are now backing this cutting-edge legislation with a bioethical standpoint that focuses on ecological, environmental and human issues.
The government must urgently hear this message instead of insisting on a controversial bill that deeply divides the public and radically shifts away from environmental challenges and human ecology. We are preparing major strategic actions, so that the MP’s do not dismantle the senators’ work.“
by Alliance VITA | January 29, 2021 | News, Bioethics Law
In early February, the French Senate will continue to examinate the bioethics bill at second reading. The latest version of the bill produced by the Assembly was amended by the Special Committee, without achieving ethical relevance.
This latest version amply illustrates the discordant viewpoints. Even though the Committee, like at the first reading, was reluctant to allow wider access to ART, the last text is disputable:
- Health care costs for ART (assisted reproductive techniques) in the event of medically diagnosed infertility are reimbursed, but simultaneously women without a male partner are allowed access to ART with a donor, thus depriving children of any paternal bond.
- the anonymityof gamete donors is lifted but only where the donor consents to it when the donor-conceived person requests it when he is 18
- Other controversial measures adopted by the Assembly have not yet been modified at this stage: double donation of gametes, oocyte auto-preservation in the absence of any pathology, and dual maternity parentage.
As established at first reading regarding children born abroad from surrogacy, the ban to transcribe foreign birth certificates onto the French civil registry is still enforced. Moreover, this ban also plans to include foreign court rulings where surrogacy contracts determine a child’s parentage. Thus, French law does not acknowledge any foreign decisions stipulating “any woman other than the one who gave birth as the mother” as well as those which mention “two fathers.”
Nonetheless, the Committee has not rescinded the MP’s amendment which, under the guise of a “derogation”, would allow lucrative establishments to collect and stock human gametes. This is a terrible shift towards the procreation market for France, which has always made the principle of non-commodification of humans and of the parts of their bodies, a fundamental ethical principle.
Just as they did at first reading, the senators have upheld their commitment to protect the very integrity of the human species by maintaining the prohibition to manufacture animal-human chimeras and transgenic human embryos.
After widespread public criticism, the Committee finally rejected the clause to allow abortions of healthy babies up until the date of birth for the unverifiable criteria of psychosocial distress.
When the February 2nd session opens, all of these provisions will be debated, and the bill could undergo further amendments.
The incoherent measures adopted by the Senate Special Committee demonstrate the profound controversies and biases surrounding this bill. The Senators still have the opportunity to create a coherent, cutting-edge legislation: a bioethical policy which includes environmental challenges and human ecology and protects future generations from serious injustices.
The most important issue is that of infertility. In spite of this, the Senators deleted section 2bis, thereby abolishing a national research program to study the causes and prevention of infertility, arguing that it is not a legislative matter. Nevertheless, this major health issue does merit the government’s attention.
During the session, the Senate can intervene to hold a vote to request an annual report on the measures to prevent infertility, educate the public, coordinate research to restore fertility and establish procedures to fight the causes of infertility, including those resulting from personal behavior and environment.
Alliance VITA actively continues to alert the public and raise awareness and calls on supporters to mobilize with “Marchons enfants!” on January 30th and 31st throughout France to insist that senators reject the bioethics bill as it currently stands.
by Alliance VITA | January 29, 2021 | News, Disabled, Euthanasia and Suicide
In a joint statement issued on January 25th, three independent international experts, expressed alarm to the UN over a growing trend in some countries to enact euthanasia laws which are largely targeted at disabled persons.
According to the Special Rapporteur on the rights of persons with disabilities, the Special Rapporteur on extreme poverty and human rights, and the independent expert on the enjoyment of all human rights by older persons: “Disability should never be grounds or justification to end someone’s life.” The independent experts said that even when access to medical assistance in dying is supposedly restricted to those at the end of life or with a terminal illness, people who are disabled and/or elderly may feel pressured to end their lives prematurely.
This expert opinion coincides with current discussions in the Canadian Parliament to allow euthanasia for people who are not at the end of life. For example, people with disabilities or individuals affected by certain conditions following a car or work-related accident, would be affected by this bill. Even though the law provides medical and procedural measures to prevent abuse, it nevertheless sends a devastating message to those affected, suggesting that their lives may not be worth living.
In recent years, various countries such as Belgium and the Netherlands who decriminalized euthanasia have already extended euthanasia to people with severe disabilities.
The three independent experts insist that disability, far from being a burden or a deficit of the person, is “a universal aspect of the human condition”. They also warn that “the proportion of people with disabilities living in poverty is significantly higher (…) than that of the rest of the population”, and that “the lack of adequate social protection” may lead these individuals “to want to end their lives in despair.”
The experts are also worried because people with disabilities are not adequately represented when laws that directly affect their rights are being drafted, and especially the “right to life”.
The UN experts adamantly declare that “under no circumstances should the law provide that it could be a well-reasoned decision for a person with a disabling condition who is not dying, to terminate their life with the support of the State.”
