Prenatal Screening for Anomalies: Between Clinical Finality and Selective Finality

Abstract

This article summarizes the results of two works of research carried out independently of one another in France. What makes it possible to present them together – like two facets of a medical practice – is the question of prenatal screening and the ethical problems which arise for people who are very much involved in this field, albeit in radically different ways: disabled persons on the one hand, and obstetrician-gynaecologists and ultrasonographers on the other. The people interviewed for the purposes of these two works of research throw an interesting light on the matter, based on their experiences and impressions. With regard to the disabled persons, it was a case of trying to remedy the social attitude which considers that they have nothing to say on these questions, despite the fact that they are of direct concern. Regarding the study of ultrasonographers and obstetrician-gynaecologists, the aim was to gain an understanding of how they had got through the intense debate that followed the Perruche ruling and the consequences of “life or prejudicial birth” actions on their professional practices and their views on the finality of prenatal screening.

Notes

1. This text sets out the main results of two works of research relating to the social effects of prenatal screening and the ethical questions it raises, especially in regard to birth selection. The first study, which was carried out among disabled persons, was subsidized by the Association des Paralysés de France and the Association Française contre les Myopathies. The second, carried out among doctors, was subsidized by the Mission de Recherche Droit et Justice. These studies led to the publication of articles and of two books (Moyse & Diederich 2001, 2006).

2. Doctors might advise a medical termination of pregnancy when the pregnancy seriously endangers the life of the mother, or when during the diagnosis the foetus shows a serious incurable illness. The practical modes of “medical termination of pregnancy” were defined in article 13 of law no. 94-654 of 29 July 1994, which states: “Where termination of pregnancy is envisaged due to there being a high probability that the unborn child has an affection of especial gravity recognized by two doctors as being incurable at the time of the diagnosis. One of these two doctors must be working in a multidiscipline centre for prenatal diagnosis”. (Not to be confused with requested legal abortion which is authorized – on the basis of the mother's decision alone – up to 14 weeks of amenorrhoea). Multi-discipline centres for prenatal diagnosis were created under decree no. 97–578 of 28 May 1997. Each case requesting a medical termination of pregnancy is presented to all members of the multi-discipline team, which may demand additional investigations or ask for outside opinions in order to support the diagnosis or prognosis.

3. Legal actions for no prenatal screening are due to the mother not having access to medical termination of pregnancy. The legal term for these legal actions is “actions de vie préjudiciable” (in English, actions for prejudicial life). We will discuss the more striking of these cases to have taken place in France over recent years. Note that the notion of “prejudicial lives” was initially used in Nazi Germany to justify the elimination of disabled persons. Such legal actions are now once again becoming more common, especially in the United States with the concepts of wrongful birth and wrongful gestation. Note that the argument put forward “consists in allowing disabled children and their parents to obtain compensation for the relatively high cost of care needed for children with special needs” (Moyse 2001b). Similar arguments can also be found in works by other authors (Nelson & Robertson 2001, Shapira 1998, Jackson 1996, Capen 1995).

4. This way of perceiving oneself would appear to be frequent among persons maintained in a condition of lesser human and social value. The same is true of certain colonized peoples and of numerous women throughout the world who consider themselves unworthy of living and of not being able to envisage bringing a girl into the world (Moyse 2006).

5. The CCNE was created by law no. 94–654 of 29 July 1994 (art 23) and by decree no. 97–555 of 29 May 1997. In addition to its Chairman, the committee consists of five persons designated by the French President, and belonging to the main philosophical and spiritual families, and 19 qualified persons chosen on the basis of their competences and utility with regard to ethical issues (doctors, biologists, researchers, philosophers, etc.).

6. The disabled persons mentioned by name had insisted that their names be mentioned, as it was one way of reappropriating a right to speak out which they deemed, until then, to have been removed.

7. Born totally paralysed following a medical error at the moment of his birth, René-Claude Lachal (RCC) died in June 2003 at the age of 65 (after being appointed emeritus researcher by the CNRS) due to medical negligence. He had been admitted to hospital for “bronchial congestion”. He was put in a room on his own, at the end of a corridor, and of course he was unable to use the bell to call for help. As a result, he suffocated to death. According to his care assistant, he had already been through something similar a few months earlier in the same pneumology ward where there was only one night nurse: alone in his room, with the door closed, he had had to put up with the television all night long, his voice not being strong enough to call out. When informed, the Ministry for Health was supposedly going to demand an inquiry. Unfortunately no inquiry took place, with the 15,000 people who died in the heatwave in France demonstrating the serious failings of French hospitals. See, for example “Après la mort solitaire d'un chercheur handicapé: les déficiences de l'hôpital” (“After the solitary death of a disabled researcher: the deficiencies of a French hospital”), Libération, June 21 2003.

8. “It's best not to be ill if you receive the Disabled Adult Allocation. 33% of beneficiaries have said that they have had to go without care at least once due to lack of finances. This is what is shown in a study carried out by the research department at the ministry of social affairs, carried out in March 2003 among 5,000 beneficiaries of minimum social benefits appearing in the 2001 census … (national average: 15%).” APF site (Association Nationale des Paralysés de France)

9. Jean-Marc Bardeau-Garneret (JMBG) is male, single and suffering from a cerebral motor deficiency caused by problems that occurred when he was born. He is a doctor in sociology.

10. Roland Chifflet (RC) is male, suffers from cranial trauma and lives alone. He has a scientific background, and has a doctorate in sociology.

11. Jean-Christophe Parisot (JCP) is male, married with four children, and suffers from myopathy. He is a doctor in political sciences, and is currently a communication consultant and Chairman of the Collectif des Démocrates Handicapés (Disabled Democrats Group).

12. It should be noted here that medical termination of pregnancy used to be called therapeutic termination of pregnancy.

13. Alexandra Kramoroff (AK) is female, married and has been tetraplegic since birth. She has a doctorate in biochemistry and works as a biochemist.

14. Run by France Télévision on behalf of the Association Française contre les Myopathies (AFM), the programme is broadcast once a year and lasts for 36 hours. “Since the launch of the Téléthon in 1987, 1.2 billion euros have been collected to fight neuromuscular diseases. An absolutely huge amount, with the generous donators knowing next to knothing about how it is used: in 2004 the Cour des Comptes (revenue court) stated that “the content of the programme says little about the exact use of the money collected in previous Téléthons” (in Le Monde, 8 December 2006 and Libération, 6 December 2003). The last Téléthon was criticized, in particular by the Catholic Church and by disabled persons who feel that calling upon public generosity is only going to help promote the elimination of foetuses with anomalies. Since 2002, one major union of researchers (SNTRS-CGT) has also been alerting the public to the consequences of this media event on medical research – increasing lack of commitment from the government, the orientation of researchers towards “all things genetic” to the detriment of other avenues of research, debatable effectiveness, “research teams in precarious situations due to being dependent on this gesture of solidarity rather than on a real research policy”, etc.

15. Anne-Sophie Parisot (ACP) is female, single, and suffers from myopathy. She has a degree in cultural management, and is a parliamentary attachée.

16. Elisabeth Auerbacher (EA) is female, suffers from spina bifida, is married, and a lawyer. She was part of the anti-establishment group of “handicapés méchants” (the “bad disabled persons”) in the 1970s and 1980s and is the author of Babette Handicapée Méchante, published by Stock (1982).

17. Diane Maroger (DM) is female, single and suffering from imperfect osteogenesis. She makes documentary films.

18. JSG is female, married and suffering from imperfect osteogenesis. She is a psychoanalyst and director of a school for polydisabled children.

19. Very recently, AK was faced with this question in a painful manner: her (first) child was going to die at birth; should she, as it was suggested to her, terminate her pregnancy? She chose to keep her child until the end of its short life. It finally died during the 7th month of pregnancy, 15 minutes before its premature birth. On the other hand, she had refused a caesarian section intended to attempt to resuscitate the baby, on the basis that there was little chance of the child living and not suffering from sequels.

20. Marcel Nuss (MN) is male, divorced with two children, and in a situation of major physical dependence; he suffers from infantile spinal amyotrophy and is tracheotomized. Chairman of Coordination Handicap Autonomie, he has written several books.

21. In this letter, MN told us in particular how that very morning his bank manager had considered taking him before a judge because he had decided to move one of his investments!

22. Jean Luc Simon (JLS) is male, single and suffering from a paraplegia caused by a car accident. He is Chairman of the Groupement Français des Personnes Handicapées. He has a degree in psychology and in educational sciences. He teaches “dynamics of disability” in several universities and leading colleges.

23. Law no. 2005–102 of 11 February 2005 on equal rights and opportunities, the participation and citizenship of disabled persons. The authors underline that this law represents considerable progress on this issue, but at the beginning of 2007 its application still remains very uncertain and many people deplore the lack of effectiveness of the new measures. Furthermore, disabled people who work are still penalized and lose the benefit of the Allocation Adulte Handicapé (AAH), even when their employment only lasted a short time and when they have no other resources!

24. This concept is often now used to designate recourse to legal action in numerous fields of social life.

25. The vast technical possibilities that the medical world makes available to future parents to screen for possible anomalies tend to legitimize the fact that parents expect a child free from any malformation. With the fantasy of the child with no faults, or of the perfect child, being constantly fuelled by what is said about technical performances and by social models put forward as representing the norm, it could rapidly become reality. It would seem that here we have artificially created a thirst for the impossible which is hard to quench, and a major confusion between “foetus quality” and the dignity of a human life.

26. Law no. 2002–303 of 4 March 2002 relating to patients’ rights and to the quality of the healthcare system. Article L 11 11–1 on “informing users of the healthcare system” and the “expression of their wishes”.

27. It is sometimes strange to note that in this study doctors often tend to feel that patients use the existence of even the slightest doubt to request a medical termination of pregnancy, whereas many patients encountered elsewhere, and having no links to these doctors, talk about the pressures they felt from doctors to make a request for medical termination of pregnancy.