Acta Psychiatr Scand 2000: 101: 3539 Printed in UK.

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Copyright # Munksgaard 2000

ACTA PSYCHIATRICA SCANDINAVICA ISSN 0902-4441

Ethical issues in psychiatric care: geneticisation and community care

Chadwick R. Ethical issues in psychiatric care: geneticisation and community care. Acta Psychiatr Scand 2000: 101: 3539. # Munksgaard 2000. This paper will examine two different though related themes in current debates about ethical issues in psychiatric care. There is, rst, the general question of who should be the main focus of the debate: the individual, the family, the local community, or the wider society? Secondly, the current controversies about the genetic basis of mental disorders will be explored with reference to their implications for both images and understanding of mental disorders and for psychiatric care. Would the understanding of the genetic causes of mental disorder lead to better treatments and better acceptance or to the potential for increased discrimination and stigmatisation?

R. Chadwick

Centre for Professional Ethics, University of Central Lancashire, Preston, UK

Key words: social welfare; ethics; genetics; psychiatry Ruth Chadwick, Centre for Professional Ethics, University of Central Lancashire, Preston, PR1 2HE, UK

Ethical issues in psychiatric care have traditionally fallen into the following categories: N ethical issues in diagnosis and its implications N ethical issues surrounding involuntary detention N ethical issues concerning treatment decisions, compulsory treatment and controversial types of treatment. I want to look at how the range of issues has been affected by two trends: rst, geneticisation with associated ethical questions about the implications of any genetic basis of mental disorders; and secondly the move towards deinstitutionalisation and care in the community, and to explore the relationship, if any, between these two. I propose to examine, rst, the impact of geneticisation on issues of medicalisation and diagnosis; second, its impact on issues concerning treatment; third, the implications of community care; nally how, if at all, the different issues relate with special reference to future trends.
Diagnosis, medicalisation and geneticisation

A signicant element in ethical issues in psychiatric care has been the ethical component in diagnosis itself; psychiatric care has been the target, for example, of accusations of medicalisation of forms of behaviour that have been found socially

unacceptable and of abuse as a political tool. The fact that minority groups in society are diagnosed as mentally ill more frequently than others may lend support to this view (1). Diagnosis has also had ethical implications in so far as it has been stigmatising, and has arguably led to discrimination against persons diagnosed as suffering from a mental disorder. The fact that it is difcult to grasp, both conceptually and imaginatively, how persons with certain experiences, e.g. thought insertion (2), view the world, opens the way to fear. Media portrayal of violent episodes is a potentially exacerbating factor. How might geneticisation impact on this situation? With advances in the identication of genes as the Human Genome Project progresses, there is intense interest in the genetic basis of mental disorders. The rst point to note is that this may be seen as part of a general trend towards `geneticisation', or the explanation of health and social phenomena in genetic terms. As a general trend this has been subject to criticism on the grounds that it may distract our attention from other causes of these phenomena and thus from other solutions; it may direct us towards what may prove to be an unfruitful reductionism. On the other hand, it may be argued that the more we know about genes, the more we will be able to understand environmental inuences, 35

Chadwick facilitating prevention and treatment. Drug therapy, for example, can be better targeted when we more fully understand the genetic basis of conditions. What are the ethical issues associated with a move towards geneticisation? First, there is the impact it may have upon diagnosis. One crucial issue here is prediction. The diagnosis of mental disorders has always been particularly contested; where a predictive diagnosis is concerned, in a case where a particular genotype is associated with a specic form of mental disorder, this will be even more so. It is important to distinguish presymptomatic from predictive testing. The issues relating to a presymptomatic test for Huntington's disease are different from a predictive test where there may be not only several genes involved but also environmental factors (cf. 3). In predictive testing generally, there is a risk of confusing genetic predisposition with predetermination. In multifactorial conditions, for example, an individual with a predisposing gene may never develop the condition (as is the case with the BRCA1 gene in breast cancer). An individual with a predisposition to a late onset condition will know neither the time of onset nor the severity. In addition, the importance of genetic inuences in psychiatry may relate to what seem to be environmental factors. As Rutter and Plomin point out, genetic inuences might work by creating a vulnerability to certain environmental risks (4). There is a possibility, however, that individuals may adopt a fatalistic attitude. In the case of mental disorders, there may be additional factors associated with self-fullling prophecy of a predisposition to, for example, depression.
Meaning Boundaries

Analogous to the earlier worries about medicalisation of behaviour regarded as socially unacceptable, there are new concerns about the boundaries of classication. This has different aspects, including both the possibility of the recognition of `new' disorders, and changes to traditional disease categories. Research is being carried out, for example, into the genetic basis of personality traits such as `novelty seeking' or adventurousness. There is some evidence for an association between novelty seeking and a dopamine D4 receptor polymorphism (5). The ethical issues arising here are that there might be a slide from identifying a type to classifying a disorder, with all the implications of stigmatisation and discrimination already noted for example, some employers might want `stickability' rather than `noveltyseeking'. Second, genetic discoveries may undermine traditional disease classications. Rather than thinking of schizophrenia and autism, for example, as identiable discrete conditions we may nd they are part of a broader spectrum of behaviour, with what we call disorders at the extreme end of a type of behaviour which in most people we regard as normal (4). So geneticisation has the potential to impact on diagnosis in three ways: the possibility of predictive diagnosis, the way in which we interpret mental disorders, and the boundaries of classication.

Geneticisation and treatment decisions

Once we see a condition as having a genetic basis we may see it in a different light. The association of mental disorders with genetic causation may facilitate a reduction in stigmatisation and an increase in understanding. In this case the condition in question would not be seen as the `fault' of the individual or of his or her social circumstances. It is not totally clear, however, that this is the result that would ensue. Guilt may disappear but there is still the possibility of shame, associated with very deep ideas about factors being `in the blood' in the family. This latter possibility, insofar as it is a real one, may perhaps be alleviated by greater public understanding of genetics, for which there are not only calls internationally but also practical experiments. Such greater understanding will also be particularly important for those who test positive for genes associated with mental disorders. 36

Ethical issues concerning treatment decisions in the past have been concerned with (a) the problematic nature of informed consent in the presence of a mental disorder; (b) the character of some of the treatments themselves (e.g., electroconvulsive therapy) and their insecure scientic foundation; and (c) issues of compulsory treatment. The advent of geneticisation has far-reaching implications, as already noted, because of the potential for predictive testing. On the one hand, this might seem to avoid some of the traditional problems. Suppose a predictive test were found for a severe mental disorder x, considered to undermine an individual's capacity for autonomous decisionmaking, and there was an effective preventive therapy available. The individual could then take an autonomous decision to have the therapy before symptoms appear, thus avoiding any worries about informed consent. Even setting aside queries about the predictive power of a given test, however, this possibility only gives rise to new ethical issues. The advent of predictive testing has led to claims of a right not to know, in contrast to the main

Geneticisation and community care thrust of much medical ethics in the past, which has tended to concentrate on patients' rights to have access to information. The ethical issues for psychiatry brought to the fore by the possibility of genetic testing do of course gure large in other areas of medicine, but they arise in a particularly complex form here. On the supposition that a predictive test has been developed for mental disorder x, the argument for testing might be put on the grounds of choice if, for example, it were known that certain environmental inuences could usefully be avoided, such as street drugs for someone with a susceptibility to schizophrenia. On the other hand, the possibility that certain genetic inuences lead individuals to `provoke' certain environmental factors, e.g. hostility and discord, is increasingly under discussion (4). Another possibility facilitated by predictive testing might simply be the opportunity to prepare, both for the individual and for those close to him or her. All this assumes, however, relatively high sensitivity and specicity of the test and does not take into account the psychological costs of testing. Both true and false negatives and positives have costs and benets (6). The costs of a positive result, whether positive or negative, might be raised anxiety, distress, damaged self-image and image in the eyes of others, not to mention potential insurance and employment worries. For considerations such as these, principles of screening, which are also relevant to testing, have emphasised that the condition sought should be `serious' (7). Although some suggested criteria of seriousness in the context of mental disorders have already been mentioned, this is particularly controversial in the light of the debates about diagnosis. Another principle widely supported as a criterion for introducing screening is that there should be therapy available, or at least `scope for action' (8). It may be hoped that one aspect of the move towards geneticisation may be that it will pave the way for gene therapy for mental disorders, but this in itself raises further ethical issues. Should mental disorder x be eliminated even before we know how, if at all, it might manifest itself? There is a question of personal identity here. Even if genes are not in a deep sense the guarantor of personal identity, they are perceived as being very closely connected with who one is. If I change the genes that control my mental life then who am I? On the other hand, preventive drug treatment, for example of an antidepressant nature, also raises questions about the identity and autonomy of the individual, as we have seen in debates about Prozac. So arguments against testing may be based on a right not to know supported by considerations of identity and integrity of the person, in addition to protection from psychological and social costs. Counter-arguments to a right not to know are increasingly voiced, supported by a view about responsibility to others. In the current context this may be bound up with a view that one has a responsibility to know, for example, if one has a genetic predisposition to be a danger to others, so that it can be prevented (cf. 9). The focus in ethical debates in genetics has included duties to family and community in addition to the autonomy of the individual, because genetics emphasises the relatedness and interconnectedness of those who share genes. The implications of this for ethical issues in psychiatry, where treatment decisions are concerned, is a shift from a tension between autonomy and paternalism to one of autonomy versus community; and this has interesting connections with the debates on community care.

Detention versus care in the community

It has been a ground for detention that a person suffering from a mental disorder is thought likely to harm others. But just as problems of homelessness and poor housing are not conned to those with a mental disorder, nor are incidents of violence. Under the criminal law persons are innocent until proven guilty. The irony is that predictive genetic testing may make such a scenario more likely in both the types of case between which we now draw a distinction. Community care has been an attempt to escape from this kind of preventive detention and thus could be seen as a system more respecting of the autonomy of the individual than is hospitalisation. On the other hand, it might be argued that autonomy is not the central question (cf. 10). Michael Parker writes: `For the communitarian, it would seem that the primary consideration in moral problems in health must be related to the embeddedness of service users in an appropriate and healthy relation to communities. The key factor in assessing what might count as appropriate community might depend in each case upon a perception of what it would take to establish a healthy balance between the rights of the individual concerned and the protection of the health and safety of the community as a whole. A further factor relates to the claim that autonomy in the principlist sense is not possible, from a communitarian perspective, but if it were possible it would be unhealthy' (11:19). By communitarianism is meant a type of ethical viewpoint which rejects the liberal emphasis on 37

Chadwick individuality and individual rights in ethics. The emphasis on autonomy in liberal ethics portrays the individual as if isolated and without essential relatedness to other persons. From a communitarian perspective, the individual must be regarded in relation to community; values are derived from the common good and traditional practices. Community care has not, however, been regarded as a `cure' as gene therapy might be and it has been criticised in the light of two issues in particular: suicide and violence, implying both that the interests of the individual themselves might not be adequately protected and that the interests of others might not be. The ethical questions turn on the lengths to which it is legitimate to go to try to prevent suicides and homicides. The problem of violence among persons with mental disorders discharged into the community may be relatively small but gives rise to considerable anxiety. It is not simply a question of the degree of supervision which would prevent such incidents, but the degree to which it is in accord with an acceptable measure of intervention and which does not completely remove respect for independence and quality of life. An interesting question is the extent to which the geneticising trend is in accordance or in tension with the community care trend. Signicantly, they both have links with the move towards communitarianism in political philosophy. How communitarianism is brought to bear on the issues, however, is different in the two contexts. In genetics, communitarianism has implications for control of and access to genetic information. The impact of the approach is that genetic information is not `owned' (in some sense) by one individual, and thus that there might be some grounds for regarding it conceptually as shared property, or actually for sharing it (12), which might lead to the lessening, in certain circumstances, of respect for condentiality. In discussions about community care, on the other hand, the issues turn on responsibility for the community to accommodate (in a wide sense) the individual with a psychiatric disorder by being prepared to `integrate' him or her into the community rather than detaining him or her out of sight. Where these two overlap is in the common theme of shared responsibility. Where they differ is in the practical and ethical implications for psychiatry, in terms of who has responsibility to whom. biological and environmental side of the old nature nurture debate respectively. It is much more complicated than that, however. As has been pointed out, discoveries relating to the genetic basis of mental disorders are likely to no small extent to be useful insofar as they can throw light on the relationship between genetic susceptibilities and environmental conditions. This being the case, greater genetic knowledge may have implications for the kinds of community care that are likely to be effective. It has been claimed, however (13), that insofar as the future of psychiatry is biological, this is true only of western psychiatry. On a global scale the increase in psychiatric morbidity is being driven by social and demographic factors. To the extent that this claim is true, and in the light of the lack of resources for community care to deal with the problems, biology is unlikely to be able to provide solutions either, concentrating as it does on diagnosis and classication of disorders. The Lancet editorial discusses the need for a symptom-based psychiatry which traces the way disorders are manifested in different cultures. The discussion above in the body of this article, however, suggests that it may be a mistake to set up an opposition in this way. We have looked at ways in which the process of diagnosis may be changed by developments in genetics, but the implication of this is that it will be seen through genetics that psychiatry is more than biology; that understanding of genetic inuences will depend on an exploration of environmental factors (which must surely include cultural difference), and vice versa. The naturenurture debate must therefore be reconstructed, and in the light of this discussion of the traditional ethical problems of psychiatry, concerning both diagnosis and treatment, will be enriched.

References
1. BRINDLE D. Racial stereotyping blamed for discrepancies in mental detention. Guardian, 17 April 1989. 2. CHADWICK R. Kant, thought insertion and mental unity. Philosophy, Psychiatry and Psychology 1995;1:105113. 3. FARMER A, OWEN MI. Genomics: the next psychiatric revolution? Br J Psychiatry 1996;169:135138. 4. RUTTER M, PLOMIN R. Opportunities for psychiatry from genetic ndings. Br J Psychiatry 1997;171:209219. 5. EBSTEIN RP, NOVICK O, UMANSKY R et al. Dopamine D4 receptor (D4DR) exon III polymorphism associated with the human personality trait of Novelty Seeking. Nature Genetics 1996;12:7884. 6. SHICKLE D, CHADWICK R. The ethics of screening: is `screening-itis' an incurable disease? J Med Ethics 1994; 20:1218. 7. Nufeld Council on Bioethics. Genetic screening ethical issues. London: Nufeld Council on Bioethics, 1993.

Naturenurture revisited

The trend towards geneticisation on the one hand and the move to community care on the other might appear to form two opposing tendencies, on the 38

Geneticisation and community care

8. Danish Council of Ethics. Ethics and the mapping of the human genome. Copenhagen: Danish Council of Ethics, 1992. 9. CHADWICK R, LEVITT MA, SHICKLE D (ed). The right to know and the right not to know. Aldershot: Avebury, 1997. 10. CHADWICK R, LEVITT MA. The ethics of community mental health care. In: CHADWICK R, LEVITT MA (ed). Ethical issues in community health care. London: Arnold, 1997:102114. 11. PARKER M. Individualism. In: CHADWICK R, LEVITT MA (ed). Ethical issues in community health care. London: Arnold, 1997:1623. 12. CHADWICK R. The status of human genetic material European approaches. In: KNOPPERS BM (ed). Human DNA: law and policy international and comparative perspectives. The Hague: Kluwer Law International, 1997:55 62. 13. Editorial: the crisis in psychiatry. Lancet 1997;349:1057.

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