SUBMISSION from the CHRISTIAN MEDICAL FELLOWSHIP to the NUFFIELD COUNCIL ON BIOETHICS WORKING PARTY on GENETIC SCREENING Article Reference: CMF Submissions, July 1992; Author: Christian Medical Fellowship INTRODUCTION Christian Medical Fellowship has as members more than 4,000 British doctors who are Christians and who desire their professional lives to be governed by the Christian faith as revealed in the Bible. We have members in all branches of the profession, and make occasional submissions on ethical matters to Governmental and other bodies. This Submission has been produced after consultation with geneticists on our Specialist Standing Committee on Genetics and with the Medical Study Group which has a nurse and a theologian/ethicist amongst its members. Extracts from our Affirmation on Christian Ethics in Medical Practice which are relevant to this Submission include: In Relation to Human Life To acknowledge that God is the Creator, the Sustainer and the Lord of all life. To recognise that man is unique, being made in the 'image of God'. To maintain the deepest respect for individual human life from its beginning to its end, including the unborn, the helpless, the handicapped. In Relation to Patients To serve each patient according to his need To respect the privacy, opinion and personal feelings of the patient and to safeguard his confidences. To speak truth to the patient, as he is able to accept it, bearing in mind our own fallibility. To do no harm to the patient, using only those drugs and procedures which we believe will be of benefit to him. To maintain as a principle that the doctor's first duty is to his patient, whilst fully accepting our duty to promote preventive medicine and public health. We would like to record our confidence in the Chairman and the members of the Working Party, and note with approval that the relevant issues are mentioned in the Terms of Reference. We are anxious not to burden the Working Party with lengthy comments on professional matters of which they will be well aware, and will confine ourselves to a few brief specific comments before emphasising those matters of major principle which we see as the chief Christian contribution to this difficult discussion. SPECIFIC COMMENTS Issues of the technical limits of genetic screening. Whilst lay people might assume that genetics is an incredibly precise and reliable science, two biological concepts - random mutation and variable expression - limit the precision of its ability to predict all clinical outcomes.This should be borne in mind. Issues of resources. Adequate counselling of those being offered presymptomatic disease detection, or of those whose risk of having affected offspring is being discussed, requires much time and expertise from professionals, and the increasing availability of new technology has implications for financial resources. For example, what would it cost to screen all 700,000 annual births in the UK for cystic fibrosis? How high a priority should genetic screening rate in comparison with other medical activities? From a resource point of view alone, how severe should diseases be before they merit being screened for? (There are of course other ethical factors relating to appropriate severity.) Issues of consent. Fully informed consent is essential and has resource implications. We endorse autonomy provided 'rights' are balanced by 'responsibilities', and whilst wishing to avoid paternalism feel that professionalism requires the counsellor to communicate clear detailed information in a human way but without direction. Issues of confidentiality. We trust the Working Party will recommend strong safeguards against any abuse of information. Issues of commerce. Information obtained from genetic screening has implications for institutions with commercial motives, such as life-insurance companies, banks, building societies etc. There may be analogies with the situation with HIV-status, and safeguards will be needed. Issues of marriage and child-bearing. We uphold the Christian concept of marriage as a divinely appointed institution and would seek to defend it in any future high-technology society which was coercive, say, in requiring both proposed marriage partners to show themselves free from genetic disorders. We are concerned that genetic screening for the detection of couples at risk of having affected offspring will place too great an emphasis on abortion as the solution to the 'problem' of disability. Whilst the Fellowship is by current standards very conservative on the whole issue of abortion, members have differing views on the ethics of abortion on grounds of handicap in the fetus. However we all agree that to some extent the 'problem' of disability lies in society's attitudes. It is important that the use of screening procedures does not harden these negative attitudes in society. This leads into the first of the three major emphases we would like to make: Christians see the value of humans in that they are created by God, and not in specific qualities. Christians recognise 'human beings' - our utilitarian society tends to recognise only what people achieve and believes in 'human doings'. In a BMJ letter of 30th May 1992, Dr Martin Briggs, commenting on an earlier article by Dame Mary Warnock, and writing 'both as a doctor and as a patient seriously affected by a disastrous disease' says 'The aim of preventing an intolerable burden to the sufferer is, of course, a noble one, but unless it is possible to prevent the disease without also preventing the patient, who might in reality find life a great deal more than tolerable, such screening is not something that some sufferers, myself included, wish for.' In other words we need to be cautious when doctors or others make judgments on the quality of life, and should make sure that the 'seek and destroy' concept does not lie at the heart of genetic screening in its application to identifying those at risk of having affected offspring. The dignity of an informed choice for good. We do not believe that genetic screening itself is an evil to be avoided. It is a legitimate but limited tool which provides information and it is what people do with the information that is important. Society must not see abortion as the only solution for those at risk of having affected offspring. Genetic screening should be used to allow couples to make informed choices with ethically acceptable outcomes (see below). These choices should be 'holistic' - ie based on psychological, social, and spiritual considerations as well as physical ones. The dignity of a choice for childlessness. Christians would see healthy children as a gift from God, not a right. Presented after genetic screening with certain possible outcomes of a future pregnancy, a couple might choose not: Pregnancy with abortion of an affected fetus or Pregnancy with birth of an affected fetus and consequent suffering but To avoid conception. This self-sacrifice could express a Christian responsibility in relationships: with the spouse, with existing family, with 'possible' children, and with a society which might have to devote many resources to a lifetime of care. Whilst not seeking in any sense hereby to undermine the significance of those with disabilities, we feel that legitimate prevention of disability is a proper aim and that this third option deserves more emphasis. CONCLUSION These issues relating to genetic screening are difficult matters, but we believe that maintaining the highest value on all human life will aid their resolution. We are grateful for the opportunity to comment and wish the Working Party well in their deliberations. Christian Medical Fellowship July 1992 conception index resource centre Copyright ©2002 Christian Medical Fellowship. Comments, suggestions, information: email webmaster@ethicsforschools.org CMF is a registered charity (No 1039823)