A Contribution to the Work Plan of the Human Genetics Commission
Joint Ethico-Medical Committee
The Catholic Union of Great Britain
Guild of Catholic Doctors
5th September 2000
1. The Joint Ethico Medical Committee of the Guild of Catholic Doctors and the Catholic Union welcome the opportunity to take part in the Human Genetics Commission's (HGC) consultation exercise about their work for the next three or four years.
2. We were unable to submit written comments before 10th April deadline but two of our members attended the public consultation on that day. They explained the situation to the chairman and were invited to submit comments on the question of consent to ante natal screening, recognising that other topics for consultation will be raised later.
The Process of Consultation
3. We feel that public confidence in expert committees has markedly declined in recent times. Recommendations from the top down are subject to critical examination. There is a growing awareness of medical issues, especially where they impinge on society. We suggest that at least some of your consultations are held in public.
4. One model that could be followed is that of Commonwealth of Australia Select Committee on the Human Embryo Experimentation Bill 1985 (Senate Hansard 25th February 1986). That committee held some of its meetings in public which enabled interested persons to raise questions with the Senators who were conducting the meetings.
5. We also support greater participation in the decision making process by patient interest groups because they have a greater awareness of the reality of patients' situations than some of the sharply focussed experts.
6. Some of the proposals of the HGC are likely to have major economic consequences. This is a further reason for discussions being public. Some of the proposals will have a special impact on certain groups, such as those with inherited diseases.
7. Eugenics is always a matter of concern to the general public. As Dr David King pointed out on April 10th, it is already a reality in China. Proposals need to be debated openly if the suspicion of covert eugenics is to be avoided.
8. The purpose of an ante natal screening test must be fully explained to the patient. If it is seen as a process, the possibility, perhaps starting at the pre natal stage, the steps of the process must be explained together with the possible outcomes. If it can be reasonably foreseen that at some stage in the process, the possibility of an abortion would be raised, that must be made explicit from the outset. Each stage is of profound importance and therefore of concern to the patient. Her consent must be based on the fullest possible knowledge. We suggest that a sound procedure could be designed based on that used in HIV.
9. It is, in our opinion, to be doubted whether it is practicable or reasonable to expect adequate counselling could he given in busy ante natal clinics. The experience of the Downs Syndrome Association is illustrative: every day they receive telephone calls from women who have come from ante natal clinics who ask "What is Downs Syndrome?" If a truly informed decision is to be made possible, patients and their suitably qualified counsellors need time and space but they are rarely, if ever available now, when only a limited number of options is available. When fifty or more are on offer, then much greater will be the difficulties confronting mothers and those upon whose help they depend.
10. Such sources of anxiety carry their own implications for the health of the pregnant woman at what should be a happy time for her.
11. The Data Protection Act illustrates the concern of society that the privacy of individuals should be respected by ensuring that information is not divulged save to those with a statutorily defined right to the knowledge. It is in our view necessary to recognise that the information about a persons genetic make_up is in a different category altogether. It describes the physical essence of a person. It belongs to a person. It is unique _ a quality that must be recognised in the measures devised to protect it from improper disclosure.
12. We would like to see this enshrined in statute law so that the individual has as it were "ownership" of this key to their physical identity. We accept that this would have implications for medical research, but consider this is outweighed by the protection it affords against commercial and employment abuses. Forensic exceptions could be made but in specific and limited circumstances (as at present with fingerprint data).
Germ Line Manipulation
13. The manipulation of future generations raises ethical issues of unique and far reaching consequences. Never before has it been possible to change an unlimited number of persons yet to be born. At the present time there is a consensus that because of unknown consequences and safety their should be no germ line interventions in humans.
14. Nevertheless some consideration should be given to the wider moral dimension of such interventions. To what extent does one generation have control over another? If one may change the other for there own reasons wanting to have children with certain attributes for example, is this not a dominance which questions the equality between individuals? It seems to us that it is of fundamental importance that all individuals are equally regarded. The next generation enjoy equal dignity worth and radical equality. It is unacceptable and fundamentally unjust to adopt an almost consumerist attitude.
15. On the other hand are there therapeutic interventions which could be justified such as the elimination from a family of a serious inherited disease and what degree of risk might be justified in attempting this? There are other issues concerning artificial extra corporeal procreation, embryo experimentation and selective abortion which would be involved with such an attempt. These have their own implications for procreative and human dignity.
The Baroness Masham
President of The Catholic Union
Dr Michael Jarmulowicz
Master Guild of Catholic Doctors
Dr Anthony Cole
Chairman Joint Ethico Medical Committee
GENERAL FORM OF CONSENT TO ANTE NATAL SCREENING TESTS
(it is not appropriate for the JEMC to construct the form but we hope it will contain the following elements)
1 A clear title in plain English
2 Identification of who the form applies to
3 Identification of who is explaining the form, their role and grade in the medical team.
4 The nature of the ante natal test
5 The purpose of the test
6 The steps that will follow if the test is positive
7 An explicit reference to the Abortion Act 1967
8 Details of counselling for specific conditions
9 An explanation of the mortality and morbidity of the steps above including those of abortion
10 An explanation that the result of the test can not be guaranteed
11 A clear alternative "I agree to the test" / "I do not agree to the test"
12 If consent has not been given go to a section elsewhere or on the reverse side
This form should then be attached to the notes and the matter not raised again by the medical team
A satisfactory general consent form is to be preferred, but if this not the case then an individual form may be devised that would be available on request by members of the public from interested bodies including the JEMC itself. Such a draft form is set out below taking account of NHS Management Executive document HSG(92)32;
We think that a gated form which allows a patient to go from one section to another would be a possibility, or the wording below could be on the reverse side of a more general form i.e.... "If you do not want ante natal screening test proceed to section......... or go to the reverse of this form."
The least satisfactory solution would be for the form below to be available separately or circulated privately.