acta_psychiatrica_scan-temas éticos en psiquiatría-genetización y cuidado comunitario

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Ethical issues in psychiatric care:

geneticisation and community careChadwick R. Ethical issues in psychiatric care: geneticisation andcommunity care.Acta Psychiatr Scand 2000: 101: 3539. # Munksgaard 2000.

This paper will examine two different though related themes in currentdebates about ethical issues in psychiatric care. There is, rst, the generalquestion of who should be the main focus of the debate: the individual,the family, the local community, or the wider society? Secondly, thecurrent controversies about the genetic basis of mental disorders will beexplored with reference to their implications for both images and

understanding of mental disorders and for psychiatric care. Would theunderstanding of the genetic causes of mental disorder lead to bettertreatments and better acceptance or to the potential for increaseddiscrimination and stigmatisation?

R. ChadwickCentre 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 traditionallyfallen into the following categories:

N ethical issues in diagnosis and its implicationsN ethical issues surrounding involuntary detentionN

ethical issues concerning treatment decisions,compulsory treatment and controversial types oftreatment.

I want to look at how the range of issues has beenaffected by two trends: rst, geneticisation withassociated ethical questions about the implicationsof any genetic basis of mental disorders; andsecondly the move towards deinstitutionalisationand care in the community, and to explore therelationship, if any, between these two.

I propose to examine, rst, the impact ofgeneticisation on issues of medicalisation and

diagnosis; second, its impact on issues concerningtreatment; third, the implications of communitycare; nally how, if at all, the different issues relatewith special reference to future trends.

Diagnosis, medicalisation and geneticisation

A signicant element in ethical issues in psychiatriccare has been the ethical component in diagnosisitself; psychiatric care has been the target, forexample, of accusations of medicalisation of formsof behaviour that have been found socially

unacceptable and of abuse as a political tool. Thefact that minority groups in society are diagnosed asmentally ill more frequently than others may lendsupport to this view (1).

Diagnosis has also had ethical implications in sofar as it has been stigmatising, and has arguably ledto discrimination against persons diagnosed assuffering from a mental disorder. The fact that itis difcult to grasp, both conceptually and imagi-natively, how persons with certain experiences, e.g.thought insertion (2), view the world, opens the wayto fear. Media portrayal of violent episodes is apotentially exacerbating factor.

How might geneticisation impact on thissituation? With advances in the identication ofgenes as the Human Genome Project progresses,there is intense interest in the genetic basis of

mental disorders. The rst point to note is thatthis may be seen as part of a general trendtowards `geneticisation', or the explanation ofhealth and social phenomena in genetic terms. Asa general trend this has been subject to criticismon the grounds that it may distract our attentionfrom other causes of these phenomena and thusfrom other solutions; it may direct us towardswhat may prove to be an unfruitful reductionism.On the other hand, it may be argued that themore we know about genes, the more we will beable to understand environmental inuences,

Acta Psychiatr Scand 2000: 101: 3539Printed in UK. All rights reserved

Copyright # Munksgaard 2000

ACTA PSYCHIATRICASCANDINAVICAISSN 0902-4441

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facilitating prevention and treatment. Drugtherapy, for example, can be better targetedwhen we more fully understand the genetic basisof conditions.

What are the ethical issues associated with amove towards geneticisation? First, there is theimpact it may have upon diagnosis. One crucial

issue here is prediction. The diagnosis of mentaldisorders has always been particularly contested;where a predictive diagnosis is concerned, in a casewhere a particular genotype is associated with aspecic form of mental disorder, this will be evenmore so. It is important to distinguish presympto-matic from predictive testing. The issues relating toa presymptomatic test for Huntington's disease aredifferent from a predictive test where there may benot only several genes involved but also environ-mental factors (cf. 3).

In predictive testing generally, there is a risk ofconfusing genetic predisposition with predetermi-nation. In multifactorial conditions, for example, anindividual with a predisposing gene may neverdevelop the condition (as is the case with theBRCA1 gene in breast cancer). An individual with apredisposition to a late onset condition will knowneither the time of onset nor the severity. Inaddition, the importance of genetic inuences inpsychiatry may relate to what seem to be environ-mental factors. As Rutter and Plomin point out,genetic inuences might work by creating avulnerability to certain environmental risks (4).There is a possibility, however, that individuals may

adopt a fatalistic attitude. In the case of mentaldisorders, there may be additional factors asso-ciated with self-fullling prophecy of a predisposi-tion to, for example, depression.

Meaning

Once we see a condition as having a genetic basis wemay see it in a different light. The association ofmental disorders with genetic causation may facil-itate a reduction in stigmatisation and an increase inunderstanding. In this case the condition inquestion would not be seen as the `fault' of the

individual or of his or her social circumstances. It isnot totally clear, however, that this is the result thatwould ensue. Guilt may disappear but there is stillthe possibility of shame, associated with very deepideas about factors being `in the blood' in thefamily. This latter possibility, insofar as it is a realone, may perhaps be alleviated by greater publicunderstanding of genetics, for which there are notonly calls internationally but also practical experi-ments. Such greater understanding will also beparticularly important for those who test positivefor genes associated with mental disorders.

Boundaries

Analogous to the earlier worries about medicalisa-tion of behaviour regarded as socially unaccepta-ble, there are new concerns about the boundariesof classication. This has different aspects, includ-ing both the possibility of the recognition of `new'disorders, and changes to traditional diseasecategories. Research is being carried out, forexample, into the genetic basis of personalitytraits such as `novelty seeking' or adventurousness.There is some evidence for an association betweennovelty seeking and a dopamine D4 receptorpolymorphism (5). The ethical issues arising hereare that there might be a slide from identifying atype to classifying a disorder, with all theimplications of stigmatisation and discriminationalready noted for example, some employersmight want `stickability' rather than `novelty-seeking'. Second, genetic discoveries may under-

mine traditional disease classications. Ratherthan thinking of schizophrenia and autism, forexample, as identiable discrete conditions we maynd they are part of a broader spectrum ofbehaviour, with what we call disorders at theextreme end of a type of behaviour which in mostpeople we regard as normal (4).

So geneticisation has the potential to impact ondiagnosis in three ways: the possibility of predictivediagnosis, the way in which we interpret mentaldisorders, and the boundaries of classication.

Geneticisation and treatment decisions

Ethical issues concerning treatment decisions in thepast have been concerned with (a) the problematicnature of informed consent in the presence of amental disorder; (b) the character of some of thetreatments themselves (e.g., electroconvulsive ther-apy) and their insecure scientic foundation; and (c)issues of compulsory treatment.

The advent of geneticisation has far-reachingimplications, as already noted, because of thepotential for predictive testing. On the one hand,this might seem to avoid some of the traditional

problems. Suppose a predictive test were found fora severe mental disorder x, considered to underminean individual's capacity for autonomous decision-making, and there was an effective preventivetherapy available. The individual could then takean autonomous decision to have the therapy beforesymptoms appear, thus avoiding any worries aboutinformed consent. Even setting aside queries aboutthe predictive power of a given test, however, thispossibility only gives rise to new ethical issues.

The advent of predictive testing has led to claimsof a right not to know, in contrast to the main

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thrust of much medical ethics in the past, whichhas tended to concentrate on patients' rights tohave access to information. The ethical issues forpsychiatry brought to the fore by the possibility ofgenetic testing do of course gure large in otherareas of medicine, but they arise in a particularlycomplex form here. On the supposition that a

predictive test has been developed for mentaldisorder x, the argument for testing might be puton the grounds of choice if, for example, it wereknown that certain environmental inuences couldusefully be avoided, such as street drugs forsomeone with a susceptibility to schizophrenia.On the other hand, the possibility that certaingenetic inuences lead individuals to `provoke'certain environmental factors, e.g. hostility anddiscord, is increasingly under discussion (4).Another possibility facilitated by predictive testingmight simply be the opportunity to prepare, bothfor the individual and for those close to him orher.

All this assumes, however, relatively high sensi-tivity and specicity of the test and does not takeinto account the psychological costs of testing. Bothtrue and false negatives andpositives have costs andbenets (6). The costs of a positive result, whetherpositive or negative, might be raised anxiety,distress, damaged self-image and image in theeyes of others, not to mention potential insuranceand employment worries.

For considerations such as these, principles ofscreening, which are also relevant to testing, have

emphasised that the condition sought should be`serious' (7). Although some suggested criteria ofseriousness in the context of mental disorders havealready been mentioned, this is particularly con-troversial in the light of the debates about diagnosis.

Another principle widely supported as a criterionfor introducing screening is that there should betherapy available, or at least `scope for action' (8). Itmay be hoped that one aspect of the move towardsgeneticisation may be that it will pave the way forgene therapy for mental disorders, but this in itselfraises further ethical issues. Should mental disorderx be eliminated even before we know how, if at

all, it might manifest itself? There is a question ofpersonal identity here. Even if genes are not in adeep sense the guarantor of personal identity, theyare perceived as being very closely connected withwho one is. If I change the genes that control mymental life then who am I? On the other hand,preventive drug treatment, for example of an anti-depressant nature, also raises questions about theidentity and autonomy of the individual, as we haveseen in debates about Prozac.

So arguments against testing may be based on aright not to know supported by considerations of

identity and integrity of the person, in addition toprotection from psychological and social costs.Counter-arguments to a right not to know areincreasingly voiced, supported by a view aboutresponsibility to others. In the current context thismay be bound up with a view that one has aresponsibility to know, for example, if one has a

genetic predisposition to be a danger to others, sothat it can be prevented (cf. 9).

The focus in ethical debates in genetics hasincluded duties to family and community inaddition to the autonomy of the individual, becausegenetics emphasises the relatedness and intercon-nectedness of those who share genes. The implica-tions of this for ethical issues in psychiatry, wheretreatment decisions are concerned, is a shift from atension between autonomy and paternalism to oneof autonomy versus community; and this hasinteresting connections with the debates on com-munity care.

Detention versus care in the community

It has been a ground for detention that a personsuffering from a mental disorder is thought likely toharm others. But just as problems of homelessnessand poor housing are not conned to those with amental disorder, nor are incidents of violence.Under the criminal law persons are innocent untilproven guilty. The irony is that predictive genetictesting may make such a scenario more likely in

both the types of case between which we now draw adistinction.

Community care has been an attempt to escapefrom this kind of preventive detention and thuscould be seen as a system more respecting of theautonomy of the individual than is hospitalisation.On the other hand, it might be argued thatautonomy is not the central question (cf. 10).Michael Parker writes:

`For the communitarian, it would seem that theprimary consideration in moral problems in healthmust be related to the embeddedness of service usersin an appropriate and healthy relation to commu-

nities. The key factor in assessing what might countas appropriate community might depend in eachcase upon a perception of what it would take toestablish a healthy balance between the rights of theindividual concerned and the protection of thehealth and safety of the community as a whole. Afurther factor relates to the claim that autonomy inthe principlist sense is not possible, from acommunitarian perspective, but if it were possibleit would be unhealthy' (11:19).

By communitarianism is meant a type of ethicalviewpoint which rejects the liberal emphasis on

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individuality and individual rights in ethics. Theemphasis on autonomy in liberal ethics portrays theindividual as if isolated and without essentialrelatedness to other persons. From a communitar-ian perspective, the individual must be regarded inrelation to community; values are derived from thecommon good and traditional practices.

Community care has not, however, been regardedas a `cure' as gene therapy might be and it has beencriticised in the light of two issues in particular:suicide and violence, implying both that theinterests of the individual themselves might not beadequately protected and that the interests of othersmight not be. The ethical questions turn on thelengths to which it is legitimate to go to try toprevent suicides and homicides. The problem ofviolence among persons with mental disordersdischarged into the community may be relativelysmall but gives rise to considerable anxiety. It is notsimply a question of the degree of supervision whichwould prevent such incidents, but the degree towhich it is in accord with an acceptable measure ofintervention and which does not completely removerespect for independence and quality of life.

An interesting question is the extent to which thegeneticising trend is in accordance or in tension withthe community care trend. Signicantly, they bothhave links with the move towards communitarian-ism in political philosophy. How communitarian-ism is brought to bear on the issues, however, isdifferent in the two contexts.

In genetics, communitarianism has implications

for control of and access to genetic information.The impact of the approach is that geneticinformation is not `owned' (in some sense) by oneindividual, and thus that there might be somegrounds for regarding it conceptually as sharedproperty, or actually for sharing it (12), which mightlead to the lessening, in certain circumstances, ofrespect for condentiality. In discussions aboutcommunity care, on the other hand, the issues turnon responsibility for the community to accommo-date (in a wide sense) the individual with apsychiatric 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 thepractical and ethical implications for psychiatry, interms of who has responsibility to whom.

Naturenurture revisited

The trend towards geneticisation on the one handand the move to community care on the other mightappear to form two opposing tendencies, on the

biological and environmental side of the old naturenurture debate respectively. It is much morecomplicated than that, however. As has beenpointed out, discoveries relating to the geneticbasis of mental disorders are likely to no smallextent to be useful insofar as they can throw light onthe relationship between genetic susceptibilities and

environmental conditions. This being the case,greater genetic knowledge may have implicationsfor the kinds of community care that are likely to beeffective.

It has been claimed, however (13), that insofaras the future of psychiatry is biological, this istrue only of western psychiatry. On a global scalethe increase in psychiatric morbidity is beingdriven by social and demographic factors. To theextent that this claim is true, and in the light ofthe lack of resources for community care to dealwith the problems, biology is unlikely to be ableto provide solutions either, concentrating as itdoes on diagnosis and classication of disorders.The Lancet editorial discusses the need for asymptom-based psychiatry which traces the waydisorders are manifested in different cultures.

The discussion above in the body of this article,however, suggests that it may be a mistake to setup an opposition in this way. We have looked atways in which the process of diagnosis may bechanged by developments in genetics, but theimplication of this is that it will be seen throughgenetics that psychiatry is more than biology; thatunderstanding of genetic inuences will depend on

an exploration of environmental factors (whichmust surely include cultural difference), and viceversa. The naturenurture debate must thereforebe reconstructed, and in the light of this discussionof the traditional ethical problems of psychiatry,concerning both diagnosis and treatment, will beenriched.

References

1. BRINDLE D. Racial stereotyping blamed for discrepancies inmental 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 withthe human personality trait of Novelty Seeking. NatureGenetics 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 ethicalissues. London: Nufeld Council on Bioethics, 1993.

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8. Danish Council of Ethics. Ethics and the mapping of thehuman genome. Copenhagen: Danish Council of Ethics,1992.

9. CHADWICK R, LEVITT MA, SHICKLE D (ed). The right to knowand the right not to know. Aldershot: Avebury, 1997.

10. CHADWICK R, LEVITT MA. The ethics of community mentalhealth care. In: CHADWICK R, LEVITT MA (ed). Ethical issuesin 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 Euro-pean approaches. In: KNOPPERS BM (ed). Human DNA: lawand 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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