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Bioethic information and analysis newsletter

Following Letter

N°43 - July 2003

Australia : A doctor has been convicted for a birth

Ineffective sterilisation
11 years ago, an Australian woman asked to have a tubal ligature to avoid any further pregnancies. A few years later, in spite of the tubal ligature, she has become pregnant. The couple have sued for damages and interest.
The Australian High Court has just announced its verdict : The doctor who performed the operation is to pay the couple 208,000 $ : 103,000 $ of "damages" for the birth and 105,000 $ for the child's education.

As a result of that decision, the Australian doctors have demonstrated, threatening to stop performing certain operations. Meanwhile, the Australian Medical Association has sounded a warning and is particularly concerned that doctors can be charged with funding the education of their patients' children.
Other voices have been raised denouncing this legal decision : in particular Barbara Mc Donald from the University of Sydney regrets that this decision considers that the birth is an impediment. In her opinion, such a verdict opens the door to legal action between couples. If a woman forgets to take her contraceptive, will she be liable to be sued by her partner ?

A similar case in Italy
In Italy, La Stampa revealed a similar case in September 2002. A woman who wished to be "protected" from pregnancy, decided to have a tubal ligature. However, the operation failed and the "unexpected" child was born on 31st December 1996.
The Venetian Court condemned the doctor, Ruggero Pasqualeto, to pay
92,782 € for the damage caused and 11,492 € to cover the costs of the case. The sentence, which was considered severe, took into account the fact that instead of performing a conventional tubal ligature, the doctor had used an unusual procedure, which is theoretically less traumatic, but the result had not been properly checked, and was in fact defective.
During the case, the doctor's lawyer was not embarrassed to suggest that if the woman really did not want the child, she could have aborted. That argument was challenged by the Order of Italian Doctors, who subsequently declared in an interview that to resort to abortion as an alternative to an ineffective sterilisation operation, was unacceptable. Notwithstanding, this was the first time that such a verdict was pronounced.

New "Perruche" cases ?
These judgements appear to be similar to the "Perruche" case, in that the court recognises that an unwanted birth can be justification for compensation. It should be remembered that in the Perruche case, it was the child who was claiming for compensation for its own birth...

Creation of a bi-sexed embryo

Between 29th June and 2nd July the European Society for Human Reproduction and Embryology brought together 4 000 "specialists in fertility", in Madrid. Many research scientists presented their work, some of which raised serious ethical problems.

Foetuses for the treatment of infertility ?
An Israeli-Dutch team (Kfar Saba hospital - University of Utrecht) announced that ovarian tissues from foetuses aborted between the 22nd and 33rd week could, after cultivation, generate ovules. According to their experiments, after 4 weeks in culture, these ovarian follicles from foetuses were able to evolve to the mature stage.
The Research Director, Dr. Tal Biron-Shental, recognised that the use of ovarian tissue from aborted foetuses is subject to controversy. Who would like to have an aborted foetus for a mother ? But in her opinion, this technique could provide a new source of ovocytes in addition to the stocks available for in-vitro fertilisation.
The spokesman for the Human Fertilisation and Embryology Authority (HFEA) declared that the use of such tissues as a source for the treatment of infertility, was unacceptable.

A bi-sexed embryo
The most controversial work was that presented by the Chicago Human Reproduction Center : The creation of a bi-sexed embryo.
Specifically, the research scientists had injected male cells into a female embryo, resulting in the formation of a bi-sexed embryo. The embryo thus transformed, was destroyed after a few days. Dr Norbert Gliecher, Director of Research, explained that the purpose of the experiment was therapeutic since it was intended to inject into a sick embryo, cells from a healthy embryo.
This announcement caused a lot of reactions from the scientists. The Australian Pr Alan Trounson, although well known for his own controversial experiments on human embryos, expressed his disapproval : "I do not see any logic in what they are trying to do, it seems to me to be entirely defective".

The figures from the Revenue Court report on mental handicap...

On 26th June 2003 the French Revenue Court released its report on "Living with a handicap" to the French President. It includes, among other things, a scathing statement on the actions undertaken for handicapped people, on the use of public funds and denounces in particular the absence of any public policy for therapeutic research into mental handicap.

Unsuitable structures
The report highlights the lack of solutions for patients suffering from mental deficiency at any age of their lives.

- Concerning the demand for places in establishments for handicapped children, « the waiting lists are, by a considerable margin, the longest for mentally deficient children. No specific measure, however, is planned for this category of handicapped person ».

- Integration in ordinary schools does not constitute a real priority for the Education Nationale (French state educational authority) « essentially due to a certain reticence on the part of teaching staff ». Consequently, more than 30 % of mentally handicapped children who attend medico-social establishments, do not receive any schooling, and 90% of those who do attend school, do so not through the state educational system, but through social affairs.

- In the « autonomous life zones » experiment, intended to help handicapped adults to achieve greater autonomy in an ordinary environment, the report states that « intellectual deficiency as such, was not part of the protocol defined by the National Monitoring Committee… The way in which this action is conducted, gives preference to those in a situation of motor or sensorial deficiency, for whom compensation would appear to be possible and rejects from the very start those suffering from intellectual deficiency, which however represent 70% of the population attending the institutions ».

- The thoughts on ageing of handicapped people are conducted « under the pressure of events » and « no legal or regulatory measures for general application, have been made in this field ». This is illustrated by the fact that from 2001 to 2003, a budget was allocated for a mere 127 places for ageing mentally handicapped people ! As stated in the report, « it is impossible to evaluate the need, but it is doubtful whether the 127 places can be sufficient to meet it ». It is worth noting that for the single example of Trisomy 21, the life expectancy of patients which was 9 years in 1929, grew to 55 by 1988 and over the last few years, has tended to be the same as for the population as a whole.

Scathing figures...
The figures presented in the report for 1999 revealed the total absence of therapeutic research into Trisomy 21.
This is the very first time that any official figures denouncing this situation, have been released.

For 1999 :
- the cost of screening of Trisomy 21 totalled 100 million euros,
- 85 434 foetal karyotypes were undertaken to screen 1 405 trisomic children,
- 357 trisomic children were live born,

Moreover there is no public therapeutic research project for trisomic patients.

The Health Directorate even admitted to the Court that « if one excludes the research teams working on screening of Trisomy 21 as such and the epidemiological factors associated with that condition », it is « unaware of any team dedicated specifically to the relationship between Trisomy 21 and mental deficiency », stating that « the only clinical research into Trisomy 21 is conducted and published by a private foundation and three hospital teams ».

Comments from the associations
This absence of research :
- is contrary to the intention declared by Pr. Jean-François Mattei, in his December 1996 report, to avoid any eugenic drift ;
- signifies that therapeutic hope is prohibited, not only for the trisomic children yet to be born, but also for the adults concerned, whose life expectancy has doubled ;
- constitutes a serious impediment for the 50,000 Trisomy 21 sufferers in France. Which patients could accept that the State invests 100 million euros per year to screen and "eradicate" them, whilst depriving them of any therapeutic research ?
- will lead to new "Perruche" cases : it is not enough to write into a law that « nobody can claim damages solely for being born », national solidarity is also needed.

In this European year for the handicapped, and in the context of the priority declared by the French President, associations are demanding that a very significant effort is made to improve the medical cover and research to benefit those suffering from Trisomy 21.