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Bioethic information and analysis newsletter

Following Letter

N°70 - October 2005

Negative impact
On the 19^th of July 2005, the Court of First Instance of Reims⁽¹⁾ granted compensation to the two older brothers of a little Down syndrome girl, considering that they had suffered from negative impact due to her birth. The judges sentenced this doctor to pay 6,400 Euro to each of the two brothers due to the harm caused to them, estimating that the birth of their younger sister had “disrupted the living conditions of the two boys” who “had received less affection, time and means of education from their mother”. Finally, “they are the victims of their parents’ separation, which occurred only two years after Catalina was born, this short timeframe showing that the birth was partially responsible for the family break-up…”

The “Anti-Perruche” law bypassed
The family’s solicitor is delighted that he was able to bypass the so-called “anti-Perruche” law of 4 March 2002, which specifies that "nobody is entitled to claim prejudice due to their birth” and restricts the indemnification granted to the parents to compensation of the damage caused to them. This Law also provides for the specific costs arising throughout the child’s life as a result of the disability, to be borne by national solidarity.

In the case of young Catalina, the parents had first sued the gynaecologist who had misinterpreted the test, for having “ruined their chance of considering abortion”. Having only obtained from the court compensation of the damage caused following this misdiagnosis (15,000 Euro each), Catalina’s parents persisted with the suffering of the siblings to gain more.

Outrageous or coherent?

This decision opens the door to the kind of eugenics, which, apart from claiming that some lives are not worth living, establishes the right to demand a disability-free and tailor-made progeny. Soon, parents will be sued by their own children for not wanting to abort a disabled child. If a prejudice towards the siblings is established, the parents will be named as culprits.

Senator Nicolas About, advocate of the anti Perruche law, is outraged by this anti-family decision: “it is not in the spirit of the law to indemnify the siblings. And it must feel like an incredible blow to realise that your mere presence results in indemnification”. Bertrand Mathieu, legal expert, professor at the University of Paris I, is worried about the ethical issues rising from this ruling: “This decision is dangerous as it establishes that life can be prejudicial to third parties. You cannot condemn eugenics on the one hand and establish such jurisprudence on the other”…

Isn’t this ruling in line with a society that encourages individual eugenics and no longer tolerates disability and suffering?

1 – Reims Court of First Instance, 19 July 2005, ruling no. 292

The European Court of Human Rights and the “anti-Perruche” Law

The European Court of Human Rights (ECHR) has just ruled against France for the retroactive enforcement of the so-called “anti-Perruche” Law ¹.

Retroactivity contested
Two families who had given birth to disabled children following an antenatal misdiagnosis (amniocentesis results were inverted in the first case and the karyotype was misinterpreted in the second case) had instigated proceedings in the administrative courts against the healthcare facilities concerned. Due to the application to the ongoing lawsuits of the Law of 4 March 2002 relative to patients rights, also called “anti Perruche” Law, which came into force while their appeals were pending, the petitioners were awarded compensation for the damage caused to them but not for the specific costs resulting from the child’s disability. The Law now provides for the specific costs arising throughout the child’s life as a result of the disability, to be borne by national solidarity. The European Court of Human Rights recalled that both families showed title to the principle of a proven claim for compensation of a very high amount, when the Law of 4 March 2002 was passed. The decision by the French legislator to apply the new liability system to ongoing proceedings therefore deprives the petitioners of a pre-existing asset value, i.e. a claim whose amount they could legitimately have hoped be determined according to previous jurisprudence. The Court therefore ruled against France for the breach of article 1 of Protocol no. 1 to the European Convention of Human Rights and gave France six months to reach an agreement with both petitioning families over the amount of compensation.

The ECHR validates the essence of the Law
The ECHR does not dispute the modification of medical liability rights as implemented by the so-called “anti Perruche” Law. “The Law of 4 March 2002 was passed following in-depth parliamentary debates that took into consideration legal, ethical and social issues as well as reasons related to the proper functioning of the healthcare system and the fair treatment of all disabled persons”. The French legislator had provided for the costs of the child’s disability to be borne by national solidarity and chose to include this aspect in the legislative scope, which organises the compensation system of the disability instead of leaving to jurisprudence the responsibility of ruling on actions coming under common liability rights. “It is not up to the Court to take the place of the French authorities to assess the relevance of the implementation of such a system, or to determine what the optimal policy should be in this difficult social domain”.

Limited consequences
The impact of this decision is therefore limited to the medical malpractice lawsuits commenced before the Law of 4 March 2002 came into force. It does not in any way establish the notion of “birth prejudice” devised by the Perruche jurisprudence.

What compensation for the disability?
Surprising though the ruling of the ECHR may be, the magistrates partially explain it by “the very limited aspect of the current compensation as well as the uncertainty reigning over the enforcement of the Law n°2005-102 of 11 February 2005, its effective date and the amounts that will be paid to the petitioners”. This Law introduces for the first time in French Law a definition of a disability. But is it acceptable that the parents of disabled children are still waiting for the payment of the “disability compensation benefit”, implemented by this Law, for lack of enforcement decrees?

1 - ECHR, 6 October 2005,  Draon c/ France and Maurice c/ France (requests no. 151303 and no. 11810 /03)  

“Reproductive health” at the UN

“Reproductive” health and abortion
The UN held its latest summit on 14 to 16 September 2005 dedicated to the development of underprivileged countries, particularly in terms of healthcare.
This was the subject of heated debates between pro-life associations and abortion advocates who consider the right to abortion as inseparable from the right to “reproductive health”, thus wanting to impose this right in all the countries.

No right to abortion
The final document speaks in favour of “universal access to reproductive health by 2015”, the definition of “reproductive health” being understood to be within the framework of the Cairo International Conference on population and development. This definition states that “reproductive health” does not lead to a universal right to abortion. This interpretation was confirmed recently during a debate between Mark Malloch Brown, chief of staff of UN Secretary-General Kofi Annan and Chris Smith, vice-chairman of the House International Relations Committee at the US Congress. Mr Smith asked Mr Brown three times whether abortion was part of “reproductive health” and Mr Brown eventually conceded that “reproductive health” did not mean abortion. This declaration made by one the highest ranking UN representatives is of the utmost importance.

Ethical embryonic stem cells?

There is a review in the 17 October issue of Nature magazine about the work of two American research teams on embryonic stem cells. These researchers are striving to find alternatives to make their work more acceptable in terms of ethics, in order to obtain American federal funding, prohibited since 2001 for the research on embryonic cells. Both teams believe they can switch from the mouse model to the human one.

Two techniques
Pr Lanza’s team, from the Advanced Cell Technology Company, managed to produce an embryonic stem mouse cell line, from an embryo, without destroying the embryo (with the same technique as that of pre-implantation genetic diagnosis). A second team, from the Whitehead Institute in Boston, created a cloned mouse embryo using altered DNA so that it cannot be implanted into the uterus. By preventing the nesting of the embryo, the team claims the embryo “loses its status of human being in the making”, thus becoming usable for research on embryonic stem cells.

Sleight of hand
Professor Arthur Caplan, director of the Bioethics Centre at the University of Pennsylvania, is worried about the efforts of these research scientists to find ethical solutions, as they constitute proof that there are ethical difficulties in working with embryos and these scientists fuel the arguments of their opponents...
Scientists are not convinced that this will ease the tension felt by advocates of more ethical research, notably the technique consisting of creating a cloned mouse embryo incapable of implantation into the uterus: “This is very clever sleight of hand” believes Jacqueline Mandelbaum, a doctor member of the National Consultative Ethics Committee, “but not only do these scientists use an embryo, this method also calls for a virus, which makes me doubtful about the quality of the stem cells produced”.