Claire Anne Brule

MAR : Access to Origins, What is the Reality ?

by Claire Anne Brule | September 22, 2023 | Medically Assisted Procreation, News

Although the 2^nd August 2021 bioethics law partly authorised access to their origins for children born by Medically Assisted Reproduction (MAR) with a third-party donor, it is not until 2043 that children who so wish will systematically have access to the identity of their donor.

A decree dated 16^th August 2023 in fact established at 31^st March 2025, the date from which gametes and embryos from anonymous donors will no longer be able to be used in the context of a MAR procedure with a third-party donor. In other words, from that date, only gametes and embryos for which donors have agreed to the forwarding of their non identifying data and the communication of their identity will be authorised for use for attempted medically assisted reproduction. By the end 2025 at the latest, the first children born under such procedure, on reaching adulthood, will be able to have access to the identity of their donor.

What exactly does the new bioethics law state?

In article 5, the law provides that “Any person conceived through medically assisted reproduction with a third-party donor may, if they so wish, on reaching adulthood, have access to the identity and non-identifying data of their third-party donor”. The non identifying data of the donor have been defined by the legislator. They include: 1) their age; 2) their general state as described at the moment of the donation; 3) their physical characteristics; 4) their marital and professional status; 5) their country of birth 6) the motivations for their donation, written by themselves. These data are collected by the doctor performing the MAR and are retained by the biomedicine agency.

The person, who on reaching adulthood, wishes to access the non-identifying data concerning the third-party donor or their identity, must apply to the Commission for access by people born by medically assisted reproduction to the data of third-party donors (CAPADD). In operation since 1^st September 2022, it comes under the Health Ministry. It is responsible for executing such requests and for retrieving the data from the biomedicine agency.

The CAPADD is also responsible, on the one hand, to obtain the agreement of third-party donors who were not subject to such provisions and who wish to reveal their identity and also to contact third-party donors if a child born before such provisions wishes to know the identity of their donor.

It is estimated that some 70,000 children have been born by MAR with third-party donors since 1973.

In its second mission, the CAPADD received 440 requests in one year for access to identifying data and/or identities including 434 admissible requests from adults born prior to the removal of the anonymity for the donation of gametes, according to the first yearly report, released on 31^st August 2023.

It was able to identify 101 donors of which 23 were deceased. 19 accepted to reveal their identity. It also received 435 spontaneous agreements from donors who donated prior to the law.

The long quest for certain children

It took nearly 30 years for the first children having reached adulthood to be heard in their quest for their origins which the legislator for the first bioethics laws in 1994 had intentionally ignored.

The recent decision by the European Court of Human Rights bears testimony for the long battle by some children in the quest for their origins. Two appeals were introduced in 2016 and 2017 by two thirty-year olds, accusing the State of withholding the information on their donors.

The Court has nevertheless just validated the compliance of anonymity for the donation of gametes as legalised in France with the European Convention for the Safeguard of Human Rights. Among the arguments put forward by the French government to justify such anonymity, “It refers, concerning the child’s interest, to the writings of the initial reporter for the 1994 bioethics bill, according to which anonymity is the “less detrimental solution”, its removal could “cause a neurosis for the choice of identity” whilst “biological identity” has no reason to take precedence over that “resulting from social relations”. It was therefore in consideration for the child’s interests that the choice of anonymity was made by the legislator.”

Except that for the children who have become adults, the reality is proving quite different. The ECLJ (European Court for Law & Justice) who contributed as a third party in the case pleaded to that effect by supporting that the claimants were however “victims of discrimination by reason of their birth through the ignorance of their biological identity or of their family medical history”.

Whilst dismissing the claims, the judgement by the ECHR (European Court of Human Rights) recorded what had led to the new French position for the removal of anonymity: “The impact study undertaken during the presentation of the latest bioethics bill underlines the need to legislate because “society has evolved since the initial bioethics laws” and because France “is one of the rare states to have opted for a principle of absolute anonymity of the donor both for the infertile couple and the child”. (…) It also reveals that “sociological and psychological research has shown that the radical application of the anonymity principle decreed in 1994 incorporates effects which are detrimental to the child, essentially because the latter is deprived of a dimension of its history which nevertheless concerns it intimately.

This shows how all the legislation surrounding MAR is sensitive.

How could one ever have imagined that these children would be indifferent to being deliberately deprived access to their origins? Even so, the French evolutions leave the children in a kind of impasse whereas the same law has extended access to MAR with third party donors to single women or female couples. Requests have increased tenfold in two years.

A persistent injustice for children

Knowledge of the identity of a donor does not include any obligation for a relationship with the donor as had been suggested during the bioethics law debates. In general, the introduction of external gametes in the reproductive process causes an injustice to the child. On reaching adulthood, the latter will be able to have access to the knowledge of its origins albeit in a limited way since it will still be deprived of its biological filiation since the donor has no vocation to be the father and the law actually prohibits him from so being.

This contradicts article 7 of the International Convention for Children’s Rights which recognises their right to know their parents and to be brought up by them, as far as is possible.

In fact, it is the very MAR procedure with an external donor which creates the impasse.

Export of Gametes and Embryos, Post Mortem assisted reproduction : the ECHR Issues a Judgement

by Claire Anne Brule | September 22, 2023 | Medically Assisted Procreation, News

The ECHR (European Court of Human Rights) has issued a judgement on the sensitive issue of post mortem assisted reproduction and the export of gametes or embryos.

The facts

Two recently widowed women, have lodged an appeal with the ECHR concerning the prohibition in France of post-mortem assisted reproduction, and its corollary: the refusal to export gametes or embryos preserved in France to a State which performs this type of MAR.

“Post mortem assisted reproduction (after death) consists in undertaking medically assisted reproduction after the death of one of the members of the couple.

From the first bioethics law, post mortem assisted reproduction was rejected by the legislator. The public health code specifies: “The man and woman forming the couple must be living, must be of reproductive age and must consent beforehand to the transfer of embryos or to the insemination”. During the latest bioethics law, the subject gave rise to much discussion. The government view, to maintain the prohibition, was finally adopted, and the prohibition is therefore maintained in France. A few rare states, in particular frontier states like Belgium and Spain authorise it.

In the two cases examined by the ECHR, a woman was asking for the transfer of her frozen embryos, conceived with the sperm of the father, who had since deceased. The other woman, wanted to transfer the frozen sperm of her husband, who was also deceased.

In both cases, the preservation centres refused their exportation. The public health code stipulates in article L2141-18: “The importation and exportation of gametes or germinal tissues from the human body are subject to authorisation from the Biomedicine Agency.” Moreover, “The preservation of gametes or germinal tissues is terminated in the event of decease of the person.” The courts, up to the State Council, confirmed this refusal to export, which the claimants are challenging, whence their application to the ECHR for violation of article 8 of the Convention (right for the respect of privacy and family life). The State Council, in both of these cases, considered among other things that the exportation requested was intended simply to circumvent the French prohibition for post mortem MAR, as the two women had no links at all with Spain.

The arguments in the debate on post mortem assisted reproduction

The latest parliamentary debates on this issue reflected the arguments “for” and “against” the subject.

For those supporting authorisation, in principle, the woman alone may and should decide what she wishes to do. In that view, procreation is an individual right without any consideration of the biological reality which invariably involves a man and a woman. Following the authorisation granted in 2021 for MAR for single women, it would, according to its supporters, be contradictory to authorise a widowed woman to conduct a MAR with the sperm of an anonymous donor whilst prohibiting her from using that of her deceased husband.

For those who remain against post mortem assisted reproduction, the decease of the biological father marks the end of any “parental project” for the couple. Additionally, in its report submitted in 2018 at the moment when the bioethics laws were being revised, the State Council mentioned other difficulties. The fact of being brought up by a single parent is a “vulnerability in itself”. The fact of “being born in a mourning context is a situation which could mark the “identity narrative” of the child, necessarily impacted by the death of the father”. Thirdly, “in such a context, it may also be difficult to create the conditions for a calm and collected decision on the part of the mother, as her decision could be influenced by family pressures and by the impact of her very recent loss”. Finally, from a legal standpoint, the authorisation of post mortem MAR would involve “amending the filiation rights and the inheritance rights in order to fully include the child in the descendance of the deceased”. Indeed, preserved embryos and gametes are not “subjects in law”.

Decision by the ECHR

By unanimous decision, the Court declared that “there was no violation of article 8 of the Convention”. In its reasoning, the Court considered that interference in private life had indeed occurred but that such interference was legitimate. On the one hand, the prohibition of post mortem assisted reproduction was stipulated in the law, and therefore known to the claimants. On the other hand, such interference corresponds to “the legitimate aims for the “protection of the rights and liberties of others” and the “protection of morality“, others in this case being the better interests of the unborn child.

Moreover, the ECHR noted “This prohibition is the result of a political choice dating back to the first bioethics law in 1994 and has been constantly reiterated at each of its periodic revisions, as well as recently, in 2021, in the context of in-depth legal debates. The ECHR noted that the legal process led to maintaining the status quo, in view of the specific ethical stakes associated with post mortem procreation. It recalled that when questions of general policy are at stake, in which deep divisions may reasonably exist in a democratic state, it is important to grant particular importance to the role of the national decision makers. All the more so when, as in this case, it is a question affecting society.”

However, the ECHR added: “In spite of the wide margin of appreciation afforded to the States concerning bioethics, the legal framework established by these States must be consistent”. Implicitly, the Court is questioning the consistency of the current procedure following the legalisation of assisted reproduction for single women.

This additive was criticised by one of the seven judges on the case, who considered that “it goes beyond the role of the judges in the case concerned and that, through confusion and muddling it contributes to indicating something to the French State, which goes beyond the bounds of the case, without any need for the Court to substitute for the legislator.”

More fundamentally, the technical devices for assisted reproduction further anchor the gametes and embryos in a status of goods, which may be exportable or not according to the legislations or a decision by judges.

According to Alliance VITA, the best interests of a child cannot be to be deliberately conceived as an orphan.

These requests for post mortem MAR show that the trend towards a “right to a child” has been under way for years, fed by a logic where “the supply generates the need”. The desire for post mortem assisted reproduction exists only because it is technically possible. This feeds into a vision of omnipotence, whose finality is to do away with time and death.

Germany : Doctors are Calling for Greater Means For Suicide Prevention

by Claire Anne Brule | September 15, 2023 | End of life, Euthanasia and Suicide, News

During the World Suicide Prevention Day, Bundesärtzkammer, the German medical association, praised the resolution for the prevention of suicide adopted by a strong majority at the Bundestag, after the German members of parliament rejected two texts intended to regulate medically assisted suicide. The medical association is asking for the suicide prevention policy to be backed up by adequate financial means.

On 6^th July, two cross-party bills were tabled at the Bundestag to provide a legal framework for medically assisted suicide. In fact, since the decision by the constitutional court on 26^th February 2020 which overturned a law from 2015 prohibiting the commercial organisation of assisted suicide, it has been performed by associations in the absence of any legal framework. According to the figures from the main associations currently providing assisted suicide services in Germany, they helped some 350 people to die in 2021. The doctors use sedatives such as midazolam, for example.

Both bills tabled on 6^th July attempted to provide a legal framework for the practice by establishing regulations. One of the bills, from Lars Castellucci, of the social-democrats (SPD) party, and Ansgar Heveling, of the Christian-democrats (CDU) party, stipulated that assisted suicide should remain prohibited but that exceptions could be made for adults after two mandatory interviews, with a minimum three-month cooling-off period between the two interviews. The other bill, tabled in particular by the liberal Katrin Helling-Plahr and ecologist Renate Künast, which was less restrictive, established a right to assisted suicide for adults and authorised doctors to prescribe a lethal substance between three and twelve weeks after a mandatory interview.

The assisted suicide associations were opposed to both bills as they did not wish assisted suicide to be regulated, arguing that the current legal framework is quite clear enough, and rejected the idea of any mandatory interview.

Meanwhile, the players concerned with suicide prevention voiced reservations regarding the establishment of approved counselling centres in order to conduct suicide candidate interviews. In their opinion, it would be better to provide long-term funding and to federate the existing regional structures, as well as the telephone and internet help lines. The second bill was particularly criticised by the suicide prevention specialists because the intended three-week minimum cooling-off period is much too short to be able to overcome a suicidal crisis through support.

Both bills were eventually rejected. However, the Bundestag parliament adopted by an overwhelming majority of 688 votes (a single vote against) a resolution to reinforce suicide prevention. This resolution calls on the Government to table a bill and a strategy for suicide prevention by 30^th June 2024. A unique national telephone help line must be set up for people having suicidal thoughts and their close relations.

In a recent statement, the medical association praises this initiative. It also welcomes the announcement made by the Health Minister that work has already begun on a national strategy. However, according to them, it is essential that suicide prevention should not remain a mere concept. “The proposals experimented and the structures must not be abandoned for financial reasons and a national agency for information and coordination of suicide prevention must not be allowed to fail for lack of funding”. According to Dr. Stefan Schumacher, in charge of the telephone help line, the people experiencing a suicidal crisis do not always have ready enough access to a telephone or internet help line, due to a lack of capacity. It is therefore essential to increase accessibility through coordination at the national level. On her side, Claudia Bausewein, President of the German Society for Palliative Care, regrets the unequal accessibility to palliative care and a great variety of information according to the diseases. “The step towards assisted suicide sometimes appears a lot easier” she warns.

As can be seen, the failed attempts at establishing a legal framework for assisted suicide in Germany clearly show the impossibility of reconciling the regulation of assisted suicide and a policy for the prevention of suicide. A coherent policy for suicide prevention cannot suffer any exceptions.

Reminder of the Law in Quebec Following the Strong Rise in Euthanasia

by Claire Anne Brule | September 15, 2023 | End of life, Euthanasia and Suicide, News

The Commission on end-of-life care has called upon doctors in Quebec practicing euthanasia, officially designated as “Medical Assistance in Dying (MAD), to follow the law more strictly.

Indeed, the exponential increase in the number of euthanasia in that Canadian province raises serious questions. The latest annual report on MAD in Canada for 2021 revealed an overall increase in the number of euthanasia of 32.4% reaching a figure of 3.3% of deaths, i.e. 10,064 cases. For Quebec which legalised euthanasia in 2015, this represents 5.5% of deaths, thus overtaking both Belgium and the Netherlands which have had a law to cover euthanasia for 21 years. This proportion is expected to reach 7% in 2023.

This warning is made in the context of changes in the law at the federal level as well as in Quebec which operates under a specific legislative framework. In 2023, Quebec voted for a highly controversial extension to the law: the handicapped whose life expectancy is not threatened are now eligible for euthanasia. Additionally, from the next 7^th December, all palliative care centres are compelled to perform euthanasia on request.

Radio Canada has reported that the Commission recorded several breaches in the law: non-compliant euthanasia practices or “euthanasia administered at the limit of the mandatory conditions”, or lack of rigour regarding the opinion of a second doctor and “shopping around” i.e. resorting to doctors who are less rigid. The commission also points out that ageing is not an incurable disease and does not justify MAD.

An editorial in the Washington Post pointed out on 13^th September that “The more the practice develops, the greater the risk of errors or abuse, in a context where errors or mistakes have irreversible consequences”.

According to the citizens’ network “Vivre dans la Dignité (Living with dignity)” : “It should be understood also that these reminders are being given whereas the true situation is probably more serious than is being described by the Commission with respect to end of life care, as it currently refuses to admit that there is any abuse.“

In fact, a scientific study issued last August, headed The Realities of Medical Assistance in Dying in Canada, warns of the serious loopholes in the euthanasia procedures. The authors concluded that “The Canadian system for medical assistance in dying does not provide the protective measures, the collection of data and the supervision necessary to protect Canadians against premature death”.

Under such conditions, it is doubtful that a mere reminder of the law will be enough to prevent the breaches observed.

The Shocking Fiasco of a Euthanasia in Belgium

by Claire Anne Brule | September 8, 2023 | End of life, Euthanasia and Suicide, News

On 6^th September 2023, Sudinfo revealed that a Belgian woman in her thirties suffering from terminal cancer had been smothered by two nurses using a pillow following a failed euthanasia attempt.

The young 36-year-old woman was suffering from cancer and in December 2021, had been informed by her doctors that she had only another year to live.

As her condition worsened, she applied for euthanasia. The latter was practised on 29^th March 2022. The procedure took place in the presence of a doctor and two nurses who had been attending the patient for several months. The product injected did not produce the expected lethal effect due to inadequate dosage. The medical team therefore smothered the young woman with a pillow. This was indicated by the autopsy as well as by the testimony of one of the nurses revealed to a third party.

Quite rightly this caused a stir in Belgium and abroad, denouncing a barbaric act. This gives cause for concern however on the gravity of the intended euthanasia which led apparently benevolent people to such cruelty.

What exactly happened? The inquiry will tell in due course since Alexina’s partner and her 15-year-old daughter have lodged a complaint with the court in Liège.

The reason recorded against this euthanasia request was for the relief of suffering. According to the medical team, euthanasia was the only solution. What about proposing palliative care instead of such a summary solution?

Beyond the sordid and dramatic aspect of this case, the manner in which the media report the facts is at the very least astonishing.

It appears revelatory of the confusion which has taken root in the Belgian procedure between sedative and euthanasia products. The terms sedation and euthanasia are now commonly used quite indifferently. As if sedation normally practiced with the intention of relieving pain, injected in a strong dose, appeared as a disguised form of euthanasia.

This recalls what has been denounced in the Netherlands. In the 3^rd 5-yearly evaluation report (2012-2016) of the Dutch law, issued in July 2017, a study of death certificates has shown that “Deep and continuous sedations until death” have increased from 8.2% of deaths in 2005 to 18% in 2015.