We are emerging from the ‘Decade of the Brain’,entering the new millennium and currently in themidst of a genetics revolution. When I was asked toprepare this article, I immediately agreed, as it seemsto me that a consumer viewpoint is an essential com-ponent of any advance that is made in genetic andneuroscientific research. It is essential that we shouldbe partners, proceeding hand in hand.

A number of aspects regarding genetic testing andmental health have occurred to me, these are basedon my position as a consumer of some 20 years andas a mother of three children who are now in their20s. I have had considerable experience of mentalillness, mental health professionals, the ‘system’,varying kinds of treatment, as well as interactionwith carers and, most importantly, with other con-sumers. My comments and concerns, then, are notsolely my own, but rather represent an amalgam ofthose that I have encountered over the years.

For myself, if I had the choice of knowing aboutmy impending serious illness as a young adult (i.e.

before my first breakdown at 27 years of age) then Idoubt whether I would have heeded the advice. Intruth, I must confess that I did NOT. I was told up-front that the illness was lifelong, that there was nocure, that I would have to be on medication for therest of my life and not to have any more childrenbecause it was ‘genetic’. Even so, ACCEPTANCE ofthe veracity of this prognosis took more than adecade. I was told but could not accept for a longtime. Being an ‘invisible’ condition, it took time forthe reality to become apparent.

The teenage years can, at the best of times, be a dif-ficult period, but to have to carry the extra burden ofthe knowledge of an impending serious illness canmake it more so. Such individuals could be treated as‘different’ and, even worse, they could be ostracised.My son, Denis, said that developing the illness wouldnot overly concern him because he has a circle offriends who he feels would stand by him, come whatmay. Additionally, these friends supported himthrough all the years of growing up with a schizo-affected mother, so there is nothing that they do notknow about schizophrenia.

Over-vigilance at such a sensitive time would needto be avoided though monitoring DEFINITE earlysymptoms is desirable. They could warrant attention

What genetic advances might mean for theconsumer in mental illness

Marilyn Mitchell

Objective: Increased research efforts into screening young people at risk of schizo-phrenia is anticipated. The aim of the present paper is to consider the ethical concernsraised by this research from a consumer’s perspective.Method: Insights into relevant ethical concerns obtained from personal experiences ofpsychotic illness are described.Results: A range of salient ethical issues were identified that need to be addressed inresearch proposals regarding the screening of people for schizophrenia risk factors.Conclusions: The importance of research into the development of screening proce-dures for schizophrenia risk factors suggests that the ethical issues identified need urgentattention. Consumer input is essential in this endeavour.Key words: ethics, primary consumer perspective, schizophrenia, screening.

Australian and New Zealand Journal of Psychiatry 2000; 34 (Suppl.):S198–S200

Marilyn Mitchell, Mental Health Advocate

Neuroscience Institute of Schizophrenia and Allied Disorders(NISAD), 384 Victoria Street, Darlinghurst, New South Wales2010, Australia. Email: nisad@garvan.unsw.edu.au

that might enable the avoidance of very severe break-downs. With luck, by then, there could be simple teststo confirm or rule out the existence of schizophrenia.But realistically, how many young people would thenwant to accept LIMITS on their lives? Because that isthe reality; that ‘care and treatment’ generally involvelearning to know and understand your illness, includ-ing exploring your limits. And what young persondoes not want to live life to the full? In my own case(too ashamed, ignorant or optimistic) it took 11 yearsfor the penny to finally drop that I needed to takemedication EVERY day and to make lifestyle adjust-ments in order to minimise the risk of relapse. I wasuniversity-educated, in the top 1–2% for IQ (so-called‘genius’ IQ said the school psychologists) but I stilltried to ride the roller coaster ride without psycho-tropics, preferring to use alternative remediesinstead, such as massive doses of vitamin B, medita-tion, yoga, religion and L-tryptophan. I would fall offevery time and only hospitalisation and the psycho-tropics would enable me to get up again.

As a young mother and teacher there was so muchto do that at that time that limiting my lifestylebecause of the illness was not a reasonable proposi-tion. It is only with ageing that I am more easily ableto ACCEPT and RESPECT my limits, knowing thatthere is a high price to pay if I do NOT. Only over thepast decade (since I have stabilised) have I been ableto admit to ‘invalid’ or ‘disabled’ status. However,please note that ‘invalid’ status does not equate to‘nothingness/worthlessness/uselessness’; far from it!My busy life includes working on a PhD thesis!

Then there is the question of the prospect ofbecoming mentally ill dominating young people’slives. Some might even be driven beyond despair tosuicide. Schizophrenia, for instance, in a high schoolsetting, could become a young person’s sole or prim-ary identity, in a similar way, for example, as beinggay might do. Such individuals might NEVER havean opportunity to identify as ‘NORMAL’, as we cannow, at least up until the time of our first breakdown.Such persons may be denied (by well-meaningparents) more daring experiences and be put intocotton wool in the belief that becoming stressedcould trigger an episode (that is, on top of the other‘normal’ stresses of life!). And so they might bedenied the right to LIVE and GROW.

Many of us already feel like the social outcasts, orthe untouchables of society. Being identified early as‘schizo’ could also predispose individuals to failureor see them EXCLUDED, for example, from medicalstudies at university because ‘they are going to become

chronically ill anyway’. Even so, I believe that giventhe opportunity many would want to know (as withany other illness) which way the die is cast. Further,I think that the adage ‘You can lead a horse to water,but you can’t make it drink’ may well apply here.However, the advice could certainly be offered. Health-care providers and carers would have to avoid,however, being overly intrusive in their clients’ liveswhile their condition was being monitored. As wealready live in a control- and surveillance-conscioussociety, this may even be seen as more acceptable.Undue emotional pressure or coercion from ‘carers’(especially parents) should also be avoided at allcosts if cooperation is desired. However, sensible andsensitive liaison with a responsible and caring mentalhealth professional could be advantageous to a‘carrier’ and perhaps even save the client from yearsof unnecessary pain and suffering.

If this approach is to work, however, I must point outthat there is one major obstacle that needs to be overcome. Something more has to be done aboutpsychotropic medications that cause drowsiness,distonic effects, dizziness (thereby potentially inter-fering with driving or operating machinery), weightgain, problems if one goes out in the sun or which inter-fere with the sex lives of consumers! For too long, theseissues have simply been denied or pushed under thecarpet; consumers are expected to suffer in silence. Thestandard (but untrue!) response from many practition-ers tends to be ‘It will go away in a few weeks’ or ‘It isnot really happening’. So please make drugs morepalatable (‘selective’) or forget about compliance!

I have generally (and privately) come to the conclu-sion that (except for the miracle of my three children) I would rather never have been born because of all the suffering and the ongoing struggle to survive thatschizophrenia involves. However, at the same time I amALMOST CERTAIN that I would not terminate theexistence or right to exist of my own unborn fetus. Iwould, however, ensure that she/he would have all thepossible love, advantages and care (as for any otherchild that I brought into the world!). So then therewould be the question of whether all babies should betested for genetic illness or only the ones at risk.

The question could then be, ‘Would it be accept-able to limit (or eliminate!) someone’s life on thebasis of a supposition?’, as we are talking here abouta genetic predisposition only. If environment is afactor that can bring out the illness, then concessionscould be made for those persons. However, whatabout ‘schizophrenogenic’ parents? I am sorry, but Ido believe that in some cases they do exist and could

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be a factor in the development of the illness. Howcould (and should) we protect a child who is at riskin such circumstances?

Another question is whether we have the right to ‘play God’ or control reproduction, potentiallydepriving future generations of hypersensitive indi-viduals who may be producers of exceptional art,writing or music? Imagine the world without VanGogh, for instance. We should never forget that thementally ill can make a contribution to society too.The progressive elimination of persons with geneticillnesses could also paradoxically result in less atten-tion by researchers to their health problems.

There is also the issue of WHEN (or whether) achild should be told. My impression is that thisshould be at the age when a child is deemed to bemature enough to comprehend and handle the truth,similar to, for example, adoption. Another consider-ation is that schizophrenia is actually a very indi-vidual illness. It is well documented that there aremany ‘schizophrenias’. A child of mine might actu-ally manifest a schizophrenia quite different from myown, for instance. Treating an unknown quantitymight be a bit like trying to make an outfit for aperson that we have never seen. I am a great believerin ‘knowing your enemy’ at least or a little or, moreto the point, ACTIVE CONSUMER INVOLVE-MENT will determine the bestpossible care for eachindividual. An aware consumer may actually be morecognisant of their condition than would be a mentalhealth professional, although working together withthe expertise of the practitioner(s),especiallyin theearlyphase (which may be a decade or more in dura-tion), is probably the preferred option. Treatmentreally doesneed to be tailor-made in order to give thebest fit for the patient. Another advantage of geneticadvances could be that a more accurate diagnosis ismade earlier (in my case it took 7–8 years for a diag-nosis to be made and the psychiatrist did not botherto inform me of it). So, I believe that we need toknow our illness at least a little so that we can dealwith it most effectively. Otherwise, might it notbecome a case of hit-and-miss?

There is also the matter of balancing private andpublic rights. Which should be prioritised? Care oftenbecomes coercion when it is deemed that public rightsare more important than those of the individual. Theelements of CHOICE and COERCION are criticaland would need to be assessed on an individual basis.Counselling, choice and confidentiality would allhave to be considered. Laws would have to protectcarriers to ensure that they are not discriminated

against in employment, health insurance or socialsituations.

As with anorexia nervosa, bulimia and obsessive-compulsive disorder, GREATER PUBLIC AWARE-NESS, UNDERSTANDING and KNOWLEDGE areNECESSARY so that the general population (as wellas prospective consumers) know what they are likelyto be in for (hence my children’s and my ‘60 Minutes’stint). This is particularly true if a patient’s conditiongoes untreated for too long. My episodes or relapseswere, in fact, becoming more severe and requiringlonger stays in hospital before I finally appreciatedthe need to take medication every day.

The benefits of genetics research could then includecircumventing yearsof chaos, confusion, uncertainty,pain and further (brain) damage, and the possibleworsening of people’s schizophrenia could be avoided.Thus, there would be the potential to improve thehealth of people with schizophrenia. The personalgrowthassociated with having an illness such as schiz-ophrenia may be lessened, however, such maturitytends to come at a heavy cost. Familiesand the com-munitycould be spared the ‘ripple’effect of the illness.The disruption and distress to so many lives is defi-nitely an aspect to consider. As people with schizo-phrenia are now out and about in the community, moreof us will now be having children of our own. Finally,I asked my son Denis what he would do if a genetictest was available. His response was that it would notreally bother him (i.e. the prospect of having schizo-phrenia). This is because of his deep and extensiveunderstanding and experience of the illness. If he tookthe test then it would be more out of curiosity than outof fear. Further, on the question of possibly aborting‘defective’ foetuses, his response was that a move inthis direction might take away the ‘I’ of society, which,he suggests, is already dwindling. Denis has an advan-tage, in one sense, to have grown up surrounded byschizophrenia so that he does not have that fear of theunknown that many who haven’t grown up in thecontext of schizophrenia might have.

If the equation were to be: GENETIC TESTING→ EARLY INTERVENTION → LESS SEVERECOURSE → ‘MILDER’ FORM OF ILLNESS →‘MILDER’ TREATMENT REQUIRED → LESSDISABLEMENT + FEWER LIMITS ON LIFE-STYLE, then this would be a very good thing. How-ever, in the real world, it might not be such a simplematter, given the element of unpredictability and the‘human’ factor. But it would be irresponsible not to atleast make some attempt to assist those who may beat risk.

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