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Submission from CMF to the Nuffield Council on Bioethics' Working Party on 'Genetics and Human Behaviour: The Ethical Context'

Published: 1st July 2001

Introduction

Christian Medical Fellowship is interdenominational and has as members over 5,000 doctors throughout the United Kingdom and Ireland 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 90 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 'genetics and human behaviour: the ethical context'. We are encouraged that the Council is making a special issue of this topic. This Submission has been produced after discussion with members of our Medical Study Group.

We have made other submissions to the Council and other official bodies on genetics issues which are accessible on our website at www.cmf.org.uk/ethics/subs/subs.htm and the committee is welcome to consult these and the enclosed recent CMF File on Genes and Behaviour for more relevant background material.

• Mental Disorders and Genetics: The Ethical Context (May 1997) - Nuffield Council on Bioethics
• Genes and the Mind (May 1997) - The Medical Research Council
• Commercial Human Genetic Testing (December 1996) - Advisory Committee on Genetic Testing
• Genetic Screening (July 1992) - Nuffield Council of Bioethics

May we begin by commending the Working Party for their Public Consultation Document which provides an excellent basis for discussion on these vital issues.

Preamble

Our submission is based on the following presuppositional framework:

1. Human beings have been individually created by God and, despite their fallenness and imperfections, derive their integrity and worth from the fact that they are made in the image of God - regardless of genotype or phenotype. We are 'flawed masterpieces' - and a complex unity of body, mind and spirit. The diversity of individual human beings is a composite of genetic, environmental, social, volitional and spiritual factors and is part of the wonder and strength of God's sovereign design. The presence of a disability, either inherited or acquired, does not detract from a person's intrinsic worth.
2. God requires us to be good stewards of creation, both of the surrounding world, and ourselves, but human knowledge and wisdom are limited and may be used for evil or good. It follows that the scientific exploration of life, including its genetic foundation, is proper and consistent with God's mandate and humanity's created nature, but must be conducted within biblical constraints. The end never justifies the means. We should use genetic information to guide the care and management of patients, and in developing new treatments, but always with the intention of loving and serving others, especially the most vulnerable.
3. Genetic testing and therapy should be entirely voluntary and require informed consent. But in the case of the subject being unable to give consent, genetic testing or therapy should only be carried out for the specific purpose of benefiting that individual by enabling therapeutic intervention. Killing a human individual is never therapeutic intervention. An individual's genetic information should be kept confidential unless it is necessary for it be known in order to benefit the life and health of that affected individual.
4. We therefore have grave concerns about the search for, and use of, genetic information for the purpose of discriminating against or destroying an existing human life, born or unborn. Such action discriminates on the basis of genotype - and is therefore incompatible with the Judaeo-Christian ethic and the spirit of historically accepted ethical codes including the Hippocratic Oath, Declaration of Geneva (1948), the International Code of Medical Ethics (1949) and the Declaration of Helsinki (1975). Doctors are required to maintain the deepest respect for individual human life from its beginning to its end. This involves protecting individual human beings, especially vulnerable human beings, from any form of exploitation including commercial exploitation. While we can judge the effectiveness of treatments, we are in no position to judge any human life as having less value than others or as unworthy of life.
5. The role of medicine is to diagnose disease with a view to treating it and relieving its symptoms. We acknowledge that there are 'shades of grey' particularly in deciding when in deciding that behaviour moves from being part of the rich tapestry of life to being abnormal and requiring treatment, be it pharmacological, psychotherapeutic or genetic. However we also believe that we must beware of any tendency and resist any pressure to medicalise behaviour that falls in the 'normal range'.
6. Human behaviour is influenced by genetic and environmental factors but the freedom to choose between right and wrong is part of the essence of being human. In spite of the limitations imposed by genetic or environmental influences, all human beings carry some degree of responsibility and are accountable to God and others for their choices and actions.
7. We have a responsibility to ensure that knowledge about the genetic basis of human behaviour is trustfully and reliably reported to the public. Where genetics apply to mental disorders it is far more about predisposition than about prediction. This principle of predisposition is even more true where 'behavioural disorders' are concerned than with the classical psychotic illnesses. Our experience is that the general public makes the mistake of assuming that if you've got the gene you get the condition. As scientific doctors and as Christians, we are opposed to this crude determinism.

Comments on questions raised in the document

4.1 What do you think are the likely advantages and disadvantages of research in behavioural genetics?

Advantages include a greater understanding of mental illness and probably of mental processes in general, and in the long-term the possible development of better treatments for mental illness. The potential disadvantages are well highlighted throughout the consultation document. We would particularly emphasise the risks of commercial and political exploitation of vulnerable groups, the difficulties of regulating research, the dangers of fostering public belief in crude genetic determinism and fuelling unrealistic expectations of 'miracle cures', and the risk of cultivating a reductionist view of humanity.

4.2 Do you think that behavioural genetics has special features?

Yes, because our behavioural and personal traits are very much more integral to our underlying identity, than are our physical features. This means that identifying or probing the underlying genes has an air of dissecting the foundations of the person. Also, psychology is a less exact science: causes tend to be multifactorial, assessment is more subjective, abnormal genetic findings are less predictive of future abnormal behaviour and there is less agreement on definitions and the limits of normality. If it is reported, for example, that 'tall men more often have a prison record than short ones' most people are aware of enough unaffected tall men to take a 'so what' attitude; but that is less likely to occur with a behavioural trait.

4.3 Should there be limits to scientific inquiry in this field?

Scientific inquiry should be motivated by a desire to benefit individuals suffering mental disorders, and aimed at meeting genuine need rather than public or commercial demand. Given limited resources and funds available for research, priority should be given to research into genetic predispositions for severe mental illness, rather than mildly abnormal character traits. It also needs to be balanced against demand for funding for research into diseases causing serious morbidity and mortality in disciplines other than mental health; regionally, nationally and globally. Absolute bans on lower priority areas of research, however, may prevent serendipitous findings, be difficult to regulate, and may drive research off-shore into locations where responsible oversight is less available.

4.4 In your view, will research in behavioural genetics have a negative or positive impact on research into social and environmental issues?

It should have a positive impact if those who have a genetic predisposition can be reliably identified and subsequently protected from environmental and social conditions which might make it more likely for them to develop behavioural problems. But the concerns of those who see funding for genetics siphoning off funding previously available for social and environmental research are founded in reality and steps need to be taken to avoid this occurring. By its very nature research into behavioural genetics attracts more public and media interest, promises more financial reward, attracts more government prestige and fuels unrealistic expectations more than research into environmental and social conditions causes of disease. There is also a psychological incentive to find 'no-fault' causes for psychopathology, rather than to discover and expose social or environmental causes of behavioural problems which might require changes in social policy or lead persons or parties to apportion blame. Genetic research has so far contributed little to advances in some other fields of medicine such as neonatology and geriatrics, and may be even less effective in developing treatments for behavioural disorders. Also, it is all too clear that the discovery of social and environmental conditions leading to mental disorder does not always lead to mitigation of these conditions.

5 How will findings in research in behavioural genetics be translated into practice?

Better treatment of mental illness, alcoholism, addiction, autism and hyperactivity might result. But seeing the future is not necessarily a blessing if it is a future without hope of effective treatment. If commercial testing is developed with heavy promotional campaigns, and heavy public demand for knowledge of non-pathological traits, a 'horoscope' culture could arise.

5.1 Should genetic tests for behavioural traits and personality characteristics be developed? Why, or why not? Does this apply to all types of behavioural trait?

Such tests must be regarded a very low priority. First there must be extensive data collection to ascertain the limits and associations of any identified genetically influenced tendencies to the development of a behavioural phenotype. When this has been accomplished it may well be that the relation between genes and behaviour is found to be too complex to make the development of tests for behavioural traits and personality characteristics worthwhile. For pathological conditions such as hyperactivity evidence-based clinical behavioural assessment should be preferred unless or until 'gene tests' with high sensitivity and specificity become available. A misinformed and anxious public could be easily exploited if commercial interests shape priorities. Rather than imposing absolute bans it may be wiser to demand that a certain percentage of all research funding devoted to this area is prioritized to severe mental illness, or by disease category.

5.2 Would the pre-natal selection of behavioural and personality traits within the normal range be morally acceptable?

No, for a range of reasons:

1. Many Christian doctors are opposed to prenatal selection in all circumstances; even for serious pathological disorders. Underlying this is the belief that human beings are worthy of utmost respect from the time of conception. This was the position generally held by doctors worldwide at the time of the adoption of the Declaration of Geneva in 1948.
2. It would lead to children being treated as consumer items, commodities to be chosen, rather than gifts to be cherished.
3. Genetic diversity gives strength to a population and encourages mutual respect, particularly for the vulnerable.
4. Resources are limited and even for those without moral objection to embryo disposal and abortion this can hardly be viewed as a medical priority in the face of global need.
5. It would create unrealistic expectations for parents and cultivate the attitude that those with less desirable character traits are less worthy of love and care.

6 What are the ethical, legal, practical and social implications of these applications of research in behavioural genetics?

Many of these are outlined in the document.

6.1 What, in your view, might be the effect of research in behavioural genetics on our understanding of health, illness, disability and abnormality?

Hopefully a greater understanding of mental illness and pathologically deviant behaviours. However, with the difficulty in distinguishing deviant from normal behaviours there must be the possibility of categorisation, medicalisation and possible stigmatisation of 'normal' individuals who are at the outer edges of the normal distribution. Knowing that a disability or abnormality is genetically influenced may provide relief to those troubled that some act or omission of theirs was responsible. However as most situations will be multifactorial this will be less clear-cut.

6.2 Is there a moral difference between the correction of a trait thought to be the result of a genetic abnormality or defect, and the enhancement of that same trait for a 'normal' individual? If so, why?

Yes. It is moral to correct a trait thought to be the result of a genetic abnormality or defect, provided that this can be done safely and effectively. This is putting back to normal an error that has occurred. It is 'restoring the masterpiece'. Enhancement of that trait for a normal individual however is in a different category. We believe that human variation is a given that must be respected, whilst conceding that the distinction between curative and enhancing measures is sometimes blurred. The morality of the action depends on the motive. To enhance body strength by taking anabolic steroids in order to cheat and win at any cost is immoral and most enhancements would have the motive of being more competitive with regard to beauty, intelligence etc. But the issue of enhancement is largely an issue of resource allocation and clinical priority. Medicine is about restoring function and treating illness, not about conformity to an ideal.

6.3 Is the genetic enhancement of behavioural or personality traits morally different to enhancement by non-genetic means such as education or medical intervention?

If we are talking about enhancement by germline or somatic gene therapy, rather than by the use of gene products (eg. growth hormone) it is qualitatively different in that:

1. It involves altering the individual directly rather than helping the individual to change in response to an environmental stimulus.
2. It raises concerns about safety and effectiveness. It is immoral to expose vulnerable human beings to serious risk in order to achieve the end of enhancing normal characteristics.
3. It is contrary to our belief that children are gifts to be cherished for their own sake and benefit, not commodities to use as a means to parental ends.
4. The promotion of enhancement of this kind would devalue some character traits relative to others, leading to stigmatization, and place too much emphasis on the desirability of biological traits as opposed to spiritual qualities.
5. It also raises concerns about resource allocation and financial cost in a global village with other more pressing health priorities.

6.4 Are there implications of research in behavioural genetics for our general responsibility for our own behavioural and personality traits?

Yes. There is a Christian principle that from those to who much has been given, much will be expected - and vice versa. Human beings are exposed to different genetic and environmental influences and vary in physical and intellectual ability and the degree to which they can be held directly responsible for their actions accordingly varies. However this does not alter the fact that all human beings are responsible to some degree for their actions and behaviour. Behavioural research may help us to understand better the genetic factors which contribute to enhancing or constraining certain behaviours, but we should resist surrendering to that crude genetic determinism that undermines moral responsibility: 'My genes made me do it'.

6.5 What are the implications for criminal justice, and the legal process generally, of research in behavioural genetics in the areas of aggression and antisocial behaviour?

Discovery of those with possible genetic predispositions to deviant behaviour should be encouraged to behave responsibly. They should not be held blameless or unable to help themselves, neither should they be regarded as an inevitable public danger and therefore be dealt with severely. (XYY karyotype is rarely used in defence or prosecution). Christians believe that all are created in the Image of God and that the freedom to choose between right and wrong is part of the essence of being human. For some with certain genetic make-up such choices may be particularly hard so that extra support and encouragement should be provided. Christians also believe that all are redeemable and that individuals can change their way of life whatever their behavioural characteristics. Numerous examples both ancient and modern could be given.

6.6 In your view, might research in behavioural genetics heighten or reduce discrimination, stereotyping and social discrimination between groups?

We are very concerned to ensure that discrimination, stigmatization, stereotyping and scapegoating are not fuelled by research in behavioural genetics, whilst agreeing that current discriminators such as skin colour, education and social class are likely to be as important.

6.7 What do you think will be the impact of genetic knowledge about behavioural traits on the individual, on families and on communities?

These are difficult to predict at present, but research with genetic screening would suggest that heightened anxiety about the future behaviour may be a factor. Our concerns about discrimination, stigmatization, stereotyping and scapegoating are equally important here.

6.8 How might health professionals, governments, employers, insurers, education authorities and others use genetic information concerning human behaviour?

There could be pressure to use genetic tests in place of evidence-based medical and educational assessments, personality questionnaires etc. We are concerned about the overvaluing of genetic tests and the undervaluing of already proven, and probably ultimately more effective, behaviour assessment measures currently in use. There are also the dangers of vested interests, commercial exploitation and covert manipulation.

6.9 Are there any circumstances when such information should be available to third parties either with or without the consent of the individual?

No, certainly not at this very hypothetical stage. It is vital that the vulnerable are protected from exploitation.

6.10 How can we ensure that consent to the disclosure of such information is properly informed and freely given?

In the same way that consent for other procedures is obtained, which is currently being reviewed and evaluated. Skilled counselling and correct and full information must be available. Proper counseling is time-intensive and expensive and involves skilled and highly trained personnel. It does not simply involve the imparting of information, but also the provision of support and sharing of responsibility in the decision-making process. Because of commercial considerations it is highly probable that adequate counseling will not be made available and that counselees may receive inadequate information or support, or not understand the consequences of decisions made. Again it is essential that vulnerable individuals are protected from exploitation and coercion.

6.11 Given the complex and sensitive nature of research in behavioural genetics, how can members of the public best be informed about it?

This is a major issue that needs urgent attention and money as progress is likely to take years rather than months. The basics of genetics as applied to life in the 21st century should be taught at all levels in schools and topics such as this consultation included in citizenship classes. This requires skilled and trained teachers being available to teach it. Most schools are hard-pressed to keep going anyway so money is required if progress is to be made.

The media and internet have a huge responsibility here; and as there are strong commercial pressures to provide material of high entertainment-value, but dubious truth-value, there have to be incentives for accurate presentations of the facts in documentaries, docudramas, interviews and soaps and legal safeguards against misinformation that could fuel misunderstanding and prejudice. The internet carries the danger of unhelpful views having equal exposure and as much opportunity for dissemination as helpful ones. Authoritative sites; such as the BBC or Medical Journal and Official patient-information sites have a huge role to play here.

6.12 Do you think that research in behavioural genetics might require new codes of practice or new regulatory controls? What in your view should be the nature of such codes of practice or controls?

Yes, particularly if funded by pharmaceutical or similar companies. Codes of practice should include enquiries about the arrangements for publication of results and the matter of who owns the results. The funding agency should have no power to inhibit the publication of adverse or negative results. There should be freedom of access to results, or if not, then careful written agreement as to the reasons for this and occasions when such a ban might be waived.

There should be adequate arrangements for research workers to discuss their work with colleagues or with others particularly if they have ethical concerns about the way the project is developing. Review by ethical committee should occur not only at the start of a project but also later to see where trends are leading. Codes of practice are preferable to regulations but only if there are means whereby they can be monitored and enforced.

6.13 Do you think that genetic tests for behavioural traits might require new codes of practice or new regulatory controls? What in your view should be the nature of such codes of practice or controls?

Yes. Particularly with regard to:

1. Product evaluation for reliability and safety
2. Advertising and product promotion
3. Accountability and monitoring of practitioners and product producers
4. Prioritization in the face of limited resources and more pressing needs.

6.14 How much priority would you accord research in behavioural genetics in the competition for necessarily limited research funds?

For mental illness reasonable priority, for non-pathological traits very low priority.

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.