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Submission from CMF to the Advisory Committee on Genetic Testing on its 'Draft Code of Practice for Human Genetic Testing Offered Commercially Direct to the Public'

Published: 1st October 2002

Introduction

Christian Medical Fellowship is interdenominational and has as members well over 4,000 British doctors who are Christians and who desire their professional and personal lives to be governed by the Christian faith as revealed in the Bible. We have members in all branches of the profession and through the International Christian Medical and Dental Association are linked with like-minded colleagues in more than 60 other countries.

We regularly make submissions on a whole range of ethical matters to Governmental and other bodies, and welcome this opportunity to comment on 'human genetic testing offered commercially direct to the public'.

This Submission has been produced after discussion by our Medical Study Group, which in addition to membership from across the medical profession, has nursing and theological inputs. One member, a consultant clinical geneticist, chairs CMF's Specialist Standing Committee on Genetics.

Preamble

Christians believe that God has made the world and everything in it, and that, uniquely among the animals, man and woman are created 'in the image of God'. All human beings have a responsibility in stewardship to look after every aspect of God's creation, and this is our general mandate for healthcare. We are accountable to God for our actions.

Genetic research and treatment per se are a perfectly proper part of Christian healthcare, as the large number of committed Christians working in the field proves. We will not address in this Submission the general issue of human genetic testing, which can as a consequence involve the contentious matter of abortion, but confine ourselves to comments on human genetic testing 'offered commercially direct to the public'. Here we express a few serious concerns of a specific ethical or practical nature.

We will make two general points before commenting as requested on each of the Draft's seven sub-sections.

The ethics of such testing being offered on a commercial basis

This is our most serious concern, because the very existence of this draft Code of Practice raises more questions than do its contents.

If such testing is of significant health benefit (and we agree it can be), why is it not made equally available on the National Health Service? A just society owes it to its members to make equitable provision for healthcare. We are concerned that this inequity could lead to a new underclass within those who have genetic abnormalities - ie those who cannot afford to find out whether they have an abnormality in order (perhaps) to be able to do something about it.

It is clear from the covering letter that accompanied the draft Code of Practice that there is strong Government support for the private aspect - 'the Government wishes to ensure that science and industry are encouraged and developed and that the competitiveness of UK business continues to improve'. We have no fundamental ideological objection to the involvement of the private sector in providing healthcare, but are concerned about this evidence of fragmentation and privatisation of healthcare provision.

Of course, we recognise the cost implications to the NHS, but whilst making such testing available free through the NHS might cost more in the short term, it might (without necessarily involving anything unethical) save money in the longer term. We urge the Government to think again about this key ethical question. Perhaps the private sector could be contracted to deliver such testing for the NHS?

The Committee is 'Advisory' only. What teeth will it have?

The House of Commons Science and Technology Committee Third Report (Human Genetics: The Science and its Consequences, 1995) raised in Paras 103 and 104 serious concerns about the need for regulation and licensing. The Government was pressed to take urgent steps to 'regulate companies offering genetic screening through a process of protocol review and licensing . . .'

The language of this draft Code is of 'recommends', 'expects', 'encourages', 'asks suppliers', 'suggests that', etc. Those who have drafted this Code clearly recognise the fundamentally different nature of such testing with its implications for families and indeed whole communities. Recognising this, surely such a regulatory body must have statutory powers to be able to enforce its agreed policies?

We draw attention below (5.4 and 5.7) to some apparent examples within the draft Code of imminent extension of the current limited proposals which highlight this need.

Specific comments on the seven sub-sections of the draft Code

Equipment and Reagents

We agree entirely.

Testing Laboratories

From our comments in (4) above, it is clear that we believe that appropriate staffing and equipment and participation in an accreditation scheme should be mandatory, such standards being backed by the force of law. This should be applied to all laboratories offering genetic testing, which we believe should be working for the NHS.

Confidentiality and Storage of Samples and Records

Against the background of our comments in (3) and (4), we generally agree with these principles, but they do raise the whole question nowhere addressed specifically of liability. Medicolegally, who is liable? Who takes responsibility if things go wrong? What Courts (British or European?) would have jurisdiction?

In the light of these questions, the recommendations for retention of samples and records seem grossly inadequate. Would it not be wise to keep them for generations, rather than three or twelve months?

What testing may be offered?

Because of the complexity of the issues, we agree that testing should be confined to determining carrier status for inherited recessive disorders, as expressed in the first bold-type paragraph of this section.

However, the very next paragraph strongly implies the possibility of imminent extension: 'Genetic testing for . . . raises issues beyond this Code of Practice. In these cases ACGT asks suppliers to present testing proposals to the Committee for comment.'

In the absence of any statutory controls, we are very concerned that ready acceptance of commercial provision for the one indication could lead to a climate wherein society might too readily accept further indications.

Information and Genetic Consultations for Customers

We express strong concern that 'genetic consultation' (counselling) with an appropriate professional is not mandatory. We would return to our point in (5.3) above about liability. However well written printed material might be, would the Courts see it as sufficient?

Involvement of General Practitioners

We agree that every effort should be made to ensure that, with consent, the GP of the 'customer' is informed of results. However, as it is GPs who usually complete Life Insurance forms, we would expect considerable difficulty in some situations.

A GP member of the Study Group raised the question that if consultation with a professional employed by the supplier is not to be compulsory, then this might involve the 'customer's' GP in extensive counselling. What might be the financial implications for the NHS of this? Would it be a 'core service' or a 'non-core service'?

Testing of Children

There is a major inconsistency here between the recommendation in sub-section 4 that testing be restricted to determining carrier status for inherited recessive disorders, and the language of the middle two ordinary-type paragraphs of sub-section 7 which talk about 'tested presymptomatically for adult-onset conditions' and 'tested for childhood-onset conditions'.

This is either an astonishing factual error in a draft Code whose production has been overseen by some distinguished professional experts, or evidence of the expectation of extension to which we alluded in (5.4).

Conclusion

We welcome the role human genetic testing could play in giving choices (some of which are unquestionably ethical) to couples who both carry a recessive gene.

However, we are seriously concerned about the ethics of inequitable provision through commercial testing, about the absence of statutory controls, about liability, and about the other practical matters raised above. We urge the Department of Health to think again.

For further information:

Steven Fouch (CMF Head of Communications) 020 7234 9668

Media Enquiries:

Alistair Thompson on 07970 162 225

About CMF:

Christian Medical Fellowship (CMF) was founded in 1949 and is an interdenominational organisation with over 5,000 doctors, 900medical and nursing students and 300 nurses and midwives as members in all branches of medicine, nursing and midwifery. A registered charity, it is linked to over 100 similar bodies in other countries throughout the world.

CMF exists to unite Christian healthcare professionals to pursue the highest ethical standards in Christian and professional life and to increase faith in Christ and acceptance of his ethical teaching.

Christian Medical Fellowship:
uniting & equipping Christian doctors & nurses
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