The Ethics of Research into Schizophrenia Prevention: A Carer's Perspective

Abstract

Objective: To outline from a carer's/family's perspective the ethical concerns raised by research into screening for factors in people at risk of schizophrenia.

Method: The need for families and carers of people with schizophrenia to seek a voice in the ethics of research into schizophrenia prevention is described. The possibility that societal myths, literature and language have created sustained ignorance about psychotic illnesses, resulting in fear and/or prejudice, is considered. The impact of these factors greatly exacerbating the burden of schizophrenia for sufferers and their families is discussed.

Results: There is evidence that people with schizophrenia share the disadvantages of other disempowered minorities. It is necessary for ethical constraints to be cognisant of this; research should include critically exploring reasons for attempting to eliminate the condition.

Conclusions: Development of an ethical framework for prevention research into schizophrenia should include carer/family input. From a carer/family perspective, research into schizophrenia should be directed at ameliorating the effects of the illness by advancing methods of early diagnosis and by finding suitable treatments that do not carry punitive side-effects, thus allowing people with the illness to reach their potential in all aspects of their lives. Therapeutic relief combined with the elimination of social ostracism would greatly benefit people with schizophrenia and their families.

What person who has watched someone they love pass through the Gehenna of acute psychotic illness and prolonged, repetitive treatments in a psychiatric unit, what person does not long for the capacity to eliminate that suffering? What family member who has experienced the devastation, the chaos of an acute episode of schizophrenia, could not conscionably endorse and encourage research into prevention of the illness?

But when the process of unravelling the strands of possibility begins, how many ethical issues underpin the challenge? And how many societal assumptions? Is it also fair to ask, before too many hopes are raised, how realistic are the possibilities, given the state of present diagnostic techniques and current research into the genetic and neurological determinants of this complex disease?

Families and carers of people with schizophrenia seek a voice in the ethics of research into schizophrenia prevention. While not the sufferers of the illness, they also suffer. While their lives are not changed as irrevocably, they certainly confront a different register of experience from other familial responsibilities and tensions. The ongoing stresses of caring for a person with schizophrenia do bring inevitable distress to their lives, sometimes resulting in unresolved breakdowns of health, relationships and personal stability.

While some do not graduate from the anger and disbelief of their first experience in watching mental illness manifest itself in someone close to them, most begin a learning progression that starts in crisis and confusion, and moves through the painful stages of numbness, disbelief, denial and grief towards varying degrees of acceptance. The capacity to transcend the challenges imposed by schizophrenia in the family is in itself an end product that has unforeseen rewards. Many find that the passage leads to a resolution expressed in models of self-healing that support others undertaking the same journey. This allows family members not only to eclipse their own sadness but to become agents of change, working for schizophrenia to effect differences in the way this illness is perceived and treated, and in the way families affected gain support structures which allow them to cope more easily with the challenges imposed.

Nowhere is the ignorance that surrounds this illness more patently exposed than when the first symptoms present. Except where there is already schizophrenia in the family, most people (irrespective of their degrees of formal or informal education) have no knowledge of the reality of schizophrenia: like everyone else, they have readily succumbed to the societal myths and stereotypes that have been used to confound and embroider what actually happens to a person when thoughts, emotions, perceptions and behaviour are disrupted to produce an array of disarming manifestations. The extent and danger of that ignorance really hits home when the diagnosis is about someone close and valued. It also will have formidable implications for any preventive program.

The sustained ignorance about psychotic illnesses and the resultant fear and prejudice have created a cultural legacy that informs social conditioning. Folklore and mythology have made attempts to explain the phenomenon, linking it to natural cycles such as phases of the moon (hence ‘lunacy’). Other explanations have been attempted by literature. The experience of ‘going mad’ has been the central focus of many great and enduring works in the European tradition. The fascinated horror of watching an enthroned leader and gentle patriarch lose his wits has not diminished in nearly 400 years. Yet the triumphant resolution of King Lear, this all-too-recognisable family tragedy, is the tenderness and compassion those close to Lear bear him in the end. The catharsis comes, not from watching his agony of mind and body, but from the lessons his family and supporters have learned at the cost of Lear losing his dignity and control. At this price some come to see clearly: their king has been spurned and reviled by the very society and family that endowed his authority and wealth (advantages they were anxious to exploit at the first opportunity).

The messages of King Lear were not so enduring in the canons of English literature. The Gothic novels of the 19th century introduced ‘madness’ as an element of dark and terrorising mystery. In Jane Eyre (1846), the hero secretly keeps his deranged wife locked in an attic – from which wild animal cries emerge at intervals, perpetuating an aura of fear and inexplicable danger throughout the household. One night the caged woman sets fire to the house, losing her own life in the process and causing the hero to become blind. However, this is not a tale of social conscience, intending to produce attitudinal change: quite the reverse. There is no pity manifest for the imprisoned woman nor sense that she is, in fact, both victim and social pariah. Rather she is represented as evil incarnate – whereas the heroine Jane Eyre is her antithesis: untroubled, submissive, nonchallenging – embodying all that is perceived as good and wholesome.

Concepts of mental disturbance as inherently evil are still reinforced by the language of exclusion, which is one of the most powerful ways societies use to marginalise and diminish minorities. Defining those who do not conform to societal norms as ‘other’ reduces them and makes them objects of fear. (This has already been well demonstrated in studies of racism and also in recent feminist discourse.) Stereotyping is greatly supported by exclusive language. The words mad, crazy and insane all have colloquial usages that generally imply a state of ‘otherness’ in which the speaker would not wish to be included – at any price, a state at the extreme end of the continuum of everyday acceptability and ‘normality’.

Is it any wonder then, that when families first confront psychotic illness at close quarters they have to unlearn a lifetime's conditioning and rethink their loved one's condition as ‘mental illness’. Not a punishment, not a force of evil, not a weakness of character or personality that forces the mind to come unstuck; not something missing (‘a screw loose’) nor indeed an intellectual deficit, even though cognitive function may be affected. The reality of just an illness, a sickness, a disease, a malfunction is so much easier to embrace and come to terms with.

Certainly, living with psychotic illness in a loved person initially challenges the boundaries of what is acceptable and appropriate and what one can reasonably expect or demand. The more erratic, aggressive or disruptive the behaviour, the greater the challenge for the family to adapt, explain and compromise.

Reaching acceptance and understanding of this most complex disease and its manifestations is a long and arduous process, supported by emotions that gradually move from despair to hope and from sadness and disappointment to resignation and beyond. More importantly, this process is fuelled by intellectual engagement that distils the inherited myths from the daily reality. By learning about and coming to understand the physiology of the disease and the malfunction or nonfunction of brain mechanisms and processes, families free themselves from the weight of fear and misunderstanding. Thus, they can much more readily and successfully address the practical issues of providing care and support for the person with schizophrenia and for the other members of the family who are also in some way affected. This heralds a significant turning point in the learning progression of families living with schizophrenia and it is hard won.

The great concern for any possible screening process, which would take place in adolescence and thus allow the benefits of early intervention, is how to translate the fruits of this personal journey into publicly endorsed perceptions and accepted knowledge. To date, people with mental illness have endured the same public image and evoked the same emotional response as people with leprosy – and, similarly, have been marginalised and maligned. Like people with leprosy (Hansen's disease), they have suffered governmental policies of containment, control and exclusion and throughout history have been spurned, belittled and alienated. In a postcolonial world, the analogy with the treatment of indigenous minorities is also telling. Yet, as recent observations in this country alone will attest, unilateral attitudinal change is almost impossible to achieve, given the weight of a long history of societal ignorance, fear, propaganda, misinformation and mythology.

History shows that much mythology is created to serve the power base of majorities and their ideologies, and is subsequently achieved through social engineering. Therefore, these potential dangers must be addressed when interfering with the life chances of any vulnerable social group. People with schizophrenia form a disempowered minority (approximately 1%%) who have little social franchise or financial strength and, because of their illness, greatly reduced opportunity to articulate their own concerns. In attempting to eliminate schizophrenia, research has to be very certain it is working to get rid of the disease – not those who might develop the disease – and not because the condition is too costly, difficult and socially challenging. These risks would need to be exposed in the context of any proposed genetic testing or in utero screening to eliminate schizophrenia.

Then there are the centuries-old lessons from King Lear as well as many parables in folklore and religions which carry a similar message: human beings require forms and degrees of suffering to reveal their innate strengths and capacities, to engender their compassion and humility. Perhaps modern capitalist society is too duped by its own images of perfection, too confident of its manipulative powers, too bent on minimising the challenges to material comfort, intellectual display and hegemonic control, thus reducing its opportunity to function in an adaptive manner. Given these caveats, rather than eliminating the disease per se, would research into schizophrenia be more importantly directed at ameliorating the effects of the illness, at advancing methods of early diagnosis, and at finding suitable treatments that do not carry such difficult side-effects, thus allowing people with the illness to reach their potential in all aspects of their lives? These imperatives could overturn the lives of sufferers and their families without devaluing the person who has the illness – rather placing the emphasis on redeeming schizophrenia's more pernicious outcomes.

Undeniably, people with schizophrenia and their families find the practical implications of the illness difficult to defy (the reduction in life chances, the range of social controls, the inadequately funded hospital and community resources). But what causes the greatest pain and sadness is the degree of social ostracism that denigrates the human worth and contribution of sufferers and thus reduces their inalienable right to be treated with dignity and respect and to be valued as sentient, functioning individuals. Any research strategies that could overturn or significantly reduce these punitive aspects, at the same time bringing therapeutic relief, would indubitably be welcomed and endorsed by people with schizophrenia and the people who care for them.