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Bioethic information and analysis newsletter

Following Letter

N°46 - October 2003

« MCCNE advice on the obligation to inform one's family of genetic risks

The French Minister of Health, Jean-François Mattei has asked the Comité Consultatif National d’Ethique (CCNE - French National Ethics Consultation Committee) whether it would be appropriate to make it law to oblige a person who has discovered a predisposition or the existence of a serious genetic disease, to inform their family circle. This legal obligation which also concerns doctors, could lead to legal proceedings in the event of non compliance.

But can genetic data, in the name of family interests, be considered as "information which it is mandatory to declare" and justify breaching medical secrecy ?

As far as the CCNE are concerned, medical secrecy constitutes an essential principle in the building of confidence between a doctor and patient ; any transgression of that principle is likely to be a retrograde step for screening. "The implementation of appropriate procedures, in strict compliance with medical secrecy, is the best likely to achieve the desired effect, i.e. the protection of the family, in all due regard for personal intimacy." The interests of the group should not be protected by law, in the form of sanctions for the patient or the doctor.

The rare cases where the information is not transmitted should not be considered as a breach of the obligation "to assist persons in danger" or a case of "exposing others to danger". This question reflects the current debate on the interests of third parties or of society which could overrule those of people themselves.

CCNE advice No. 76, 24th April 2003, made public on 2nd October 2003

Humbert case : Should one legislate on euthanasia ?

The current media exposure afforded to the young Vincent Humbert, who had been in hospital for three years in a functional rehabilitation centre and who died after, on several occasions, asking his mother to end his days, again raises the question of euthanasia.

Should one legislate euthanasia ?
The media are asking the question : should France join the Netherlands and Belgium in legalising euthanasia ? Can palliative care relieve all suffering, in particular for quadriplegic patients or others who are themselves  incapable of putting an end to their days ?

Reading the press on the death of Vincent Humbert shows that there is some confusion in the minds of the public, of journalists and even of some doctors on the difference between ending active treatment (e.g. artificial ventilation) and euthanasia which is an "assistance" to die by a lethal act or medicine.

An end to relentless therapy
The question to ask is that of ending life sustaining therapies in situations of therapeutic deadlock in patients who no longer have any will to live. The paediatrician Edwige Antier, in an article published in the Figaro on 27th September 2003 asks the following question : Could certain treatments or certain basic care, such as feeding, have been reduced in order that death might have come naturally ? Could this possibly avoid the brutal request to die which is none other than assisted suicide.  One can well imagine that the young Vincent, who wanted to die and if he could have avoided feeding himself, could have himself reduced the care which was keeping him alive, in particular feeding. In fact, feeding and hydration are habitually considered as basic care and not as extraordinary treatment. Active curative treatment is quite legally  curtailed in the terminal phase and palliative care takes over.

In the Humbert case, Vincent, who was still being artificially fed, asked his mother to inject him with a substance which plunged him into a prolonged coma. After two days, the intensive care team, who had revived him to avoid being accused of failure to render assistance, decided to cease artificial ventilation which was desired neither by the family, nor by the patient himself. They did not cause death ; it was therefore not a case of euthanasia on the part of the doctors. They ceased a treatment which had become out of proportion by ceasing the artificial ventilation of a patient who no longer wished to be revived. Till the end, they rejected euthanasia  in spite of certain pressures1.

The current state of the law
The current law already provides some satisfactory answers. The current law in fact provides :
- access for all patients (and their families), whose condition so requires, to palliative care (physical, psychological, social and spiritual support in the event of serious or chronic disease) ;
- information to the patient and the patient's informed consent, and therefore the choice for the patient to cease active treatments.

The criteria for ceasing revival exist when treatments become out of proportion in the terminal phase. However, one question remains outstanding today : can patients request not to be fed ? This question frequently crops up in geriatrics and in cancer cases, and doctors and medical staff have to decide on an individual basis whether to continue or to cease feeding.

In conclusion, the general legalisation of curtailing the life of a patient, whether quadriplegic, handicapped, in terminal phase or isolated, would create a major risk of degeneration. Indeed, the relief from suffering and unbearably extended agony would generate other sufferings associated with a breach of the social contract on which all humanity is founded, such as the prohibition of murder and of incest . No new law legalising or depenalizing  euthanasia could today, from the point of view of palliative care teams, cover the rare, complex cases which must be considered on an individual basis. 

1/ Le Quotidien du Médecin  7-10-2003  (Press review  www.genethique.org )

The Draft law on Embryo Research presented to the French National Assembly

The French Members of Parliament will soon be returning to the difficult debates for the 2nd reading of the Bioethics Law at the National Assembly.

Research on embryos

The crucial ethical question concerns research on embryos. The research, indeed involves their destruction. The legislator can well see that this is a transgression  of the « principle which must remain fundamental : respect for life from its very beginning1» but the French Minister of Health, J.-F. Mattéi, who states this principle with conviction, does not believe « that medical knowledge can advance at certain moments without transgression […for example] the law on abortion, which is considered as a transgression in a particular case. Each time that we resort to prenatal diagnostics, we can well see the exception... » The same applies to medically assisted procreation which leads to research on the embryo and extends the list of transgressions. Moreover, by transgressing the fundamental principle proclaimed  by the law, the Minister of Health admits that research may be undertaken on embryos, in exceptional circumstances, for highly selected studies, and for a period limited to five years.

Creation of embryos
With respect to the text adopted by the French Senate, and whilst being opposed to the creation of embryos for research purposes, the draft law being presented at the National Assembly opens up the opportunity for not restricting the research to supernumerary embryos held « in stock » on the date of promulgation of the law, but also proposes to extend it to the « flux » of future supernumerary embryos which, tomorrow, will not be covered by any parental project. This provision, introduces surreptitiously, but clearly, the constitution of a bank of embryos for research, which the draft law appeared, on the other hand, to wish to condemn.

The most important and the most controversial is article 19, which covers the limits which would be applicable to research on embryos, despite the prominent formal prohibition. This exception is subject to nine conditions ; the embryo must have been conceived in vitro in the context of MAP, and not be covered by any parental project, this being certified in writing by the couple, specifying their acceptance of the research. The other conditions concern the serious nature of the project, the absence of any alternative method, and supervision by the Biomedical Agency, the new state authority created by the law and which combines all the research supervision and control devices.

The absence of an alternative ?

The therapies concerned are in fact regenerative therapies involving embryonic stem cells. However, « the prospects of cure » are for the time being inapplicable to man because the grafting of embryonic stem cells is not without danger. J.-F. Mattei in fact says as much quite bluntly: "To speak today of any immediate therapeutic hope is therefore a lie." "In the debates, there is no point in deceiving the patient associations, nor the patients themselves. It is a long road... which has in fact not yet begun to produce the first step of the least evidence, even on animal models." We are aware, in fact, that such research has been undertaken for the last twenty years in Anglo-Saxon nations, and the results are still awaited. Moreover, we are aware that embryos are not the only source of stem cells since there are adult stem cells in bone marrow and in the various organs of every individual, as well as in the blood cells in the umbilical cord. Research in this domain is in full swing all over the world and some positive results have already been achieved2. This is already more than an alternative to the use of human embryos. Many scientists believe that it is the only hopeful route.

Finally, despite all the rhetoric, nobody believes that such research can be of any use to the embryo. Of course, they introduce the embryo into the world of medicine, but for the good of others.

1- Hearing of the social affairs commission at the Senate, 12th December 2002

2- Gène-éthique Nos. 32 and 33

On the revision of the bio-ethics laws, see also Gène-éthique Nos. 36 and 38