Abstract
Objective
Increased research efforts into screening young people at risk of schizophrenia is anticipated. The aim of the present paper is to consider the ethical concerns raised by this research from a consumer's perspective.
Method
Insights into relevant ethical concerns obtained from personal experiences of psychotic illness are described.
Results
A range of salient ethical issues were identified that need to be addressed in research proposals regarding the screening of people for schizophrenia risk factors.
Conclusions
The importance of research into the development of screening procedures for schizophrenia risk factors suggests that the ethical issues identified need urgent attention. Consumer input is essential in this endeavour.
We are emerging from the ‘Decade of the Brain’, entering the new millennium and currently in the midst of a genetics revolution. When I was asked to prepare this article, I immediately agreed, as it seems to me that a consumer viewpoint is an essential component of any advance that is made in genetic and neuroscientific research. It is essential that we should be partners, proceeding hand in hand.
A number of aspects regarding genetic testing and mental health have occurred to me, these are based on my position as a consumer of some 20 years and as a mother of three children who are now in their 20s. I have had considerable experience of mental illness, mental health professionals, the ‘system’, varying kinds of treatment, as well as interaction with carers and, most importantly, with other consumers. My comments and concerns, then, are not solely my own, but rather represent an amalgam of those that I have encountered over the years.
For myself, if I had the choice of knowing about my impending serious illness as a young adult (i.e. before my first breakdown at 27 years of age) then I doubt whether I would have heeded the advice. In truth, I must confess that I did NOT. I was told upfront that the illness was lifelong, that there was no cure, that I would have to be on medication for the rest of my life and not to have any more children because it was ‘genetic’. Even so, ACCEPTANCE of the veracity of this prognosis took more than a decade. I was told but could not accept for a long time. Being an ‘invisible’ condition, it took time for the reality to become apparent.
The teenage years can, at the best of times, be a difficult period, but to have to carry the extra burden of the knowledge of an impending serious illness can make 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 would not overly concern him because he has a circle of friends who he feels would stand by him, come what may. Additionally, these friends supported him through all the years of growing up with a schizo-affected mother, so there is nothing that they do not know about schizophrenia.
Over-vigilance at such a sensitive time would need to be avoided though monitoring DEFINITE early symptoms is desirable. They could warrant attention that might enable the avoidance of very severe breakdowns. With luck, by then, there could be simple tests to confirm or rule out the existence of schizophrenia. But realistically, how many young people would then want to accept LIMITS on their lives? Because that is the reality; that ‘care and treatment’ generally involve learning to know and understand your illness, including exploring your limits. And what young person does not want to live life to the full? In my own case (too ashamed, ignorant or optimistic) it took 11 years for the penny to finally drop that I needed to take medication EVERY day and to make lifestyle adjustments in order to minimise the risk of relapse. I was university-educated, in the top 1–2% for IQ (so-called ‘genius’ IQ said the school psychologists) but I still tried to ride the roller coaster ride without psychotropics, preferring to use alternative remedies instead, such as massive doses of vitamin B, meditation, yoga, religion and L-tryptophan. I would fall off every time and only hospitalisation and the psychotropics would enable me to get up again.
As a young mother and teacher there was so much to do that at that time that limiting my lifestyle because of the illness was not a reasonable proposition. It is only with ageing that I am more easily able to ACCEPT and RESPECT my limits, knowing that there is a high price to pay if I do NOT. Only over the past decade (since I have stabilised) have I been able to 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 of becoming mentally ill dominating young people's lives. Some might even be driven beyond despair to suicide. Schizophrenia, for instance, in a high school setting, could become a young person's sole or primary identity, in a similar way, for example, as being gay might do. Such individuals might NEVER have an opportunity to identify as ‘NORMAL’, as we can now, at least up until the time of our first breakdown. Such persons may be denied (by well-meaning parents) more daring experiences and be put into cotton wool in the belief that becoming stressed could trigger an episode (that is, on top of the other ‘normal’ stresses of life!). And so they might be denied the right to LIVE and GROW.
Many of us already feel like the social outcasts, or the untouchables of society. Being identified early as ‘schizo’ could also predispose individuals to failure or see them EXCLUDED, for example, from medical studies at university because ‘they are going to become chronically ill anyway’. Even so, I believe that given the opportunity many would want to know (as with any 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. Healthcare providers and carers would have to avoid, however, being overly intrusive in their clients' lives while their condition was being monitored. As we already live in a control- and surveillance-conscious society, this may even be seen as more acceptable. Undue emotional pressure or coercion from ‘carers’ (especially parents) should also be avoided at all costs if cooperation is desired. However, sensible and sensitive liaison with a responsible and caring mental health professional could be advantageous to a ‘carrier’ and perhaps even save the client from years of unnecessary pain and suffering.
If this approach is to work, however, I must point out that there is one major obstacle that needs to be overcome. Something more has to be done about psychotropic medications that cause drowsiness, distonic effects, dizziness (thereby potentially interfering with driving or operating machinery), weight gain, problems if one goes out in the sun or which interfere with the sex lives of consumers! For too long, these issues have simply been denied or pushed under the carpet; consumers are expected to suffer in silence. The standard (but untrue!) response from many practitioners tends to be ‘It will go away in a few weeks’ or ‘It is not really happening’. So please make drugs more palatable (‘selective’) or forget about compliance!
I have generally (and privately) come to the conclusion 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 that schizophrenia involves. However, at the same time I am ALMOST CERTAIN that I would not terminate the existence or right to exist of my own unborn fetus. I would, however, ensure that she/he would have all the possible love, advantages and care (as for any other child that I brought into the world!). So then there would be the question of whether all babies should be tested for genetic illness or only the ones at risk.
The question could then be, ‘Would it be acceptable to limit (or eliminate!) someone's life on the basis of a supposition?’, as we are talking here about a genetic predisposition only. If environment is a factor that can bring out the illness, then concessions could be made for those persons. However, what about ‘schizophrenogenic’ parents? I am sorry, but I do believe that in some cases they do exist and could be a factor in the development of the illness. How could (and should) we protect a child who is at risk in such circumstances?
Another question is whether we have the right to ‘play God’ or control reproduction, potentially depriving future generations of hypersensitive individuals who may be producers of exceptional art, writing or music? Imagine the world without Van Gogh, for instance. We should never forget that the mentally ill can make a contribution to society too. The progressive elimination of persons with genetic illnesses could also paradoxically result in less attention by researchers to their health problems.
There is also the issue of WHEN (or whether) a child should be told. My impression is that this should be at the age when a child is deemed to be mature enough to comprehend and handle the truth, similar to, for example, adoption. Another consideration is that schizophrenia is actually a very individual illness. It is well documented that there are many ‘schizophrenias’. A child of mine might actually manifest a schizophrenia quite different from my own, for instance. Treating an unknown quantity might be a bit like trying to make an outfit for a person that we have never seen. I am a great believer in ‘knowing your enemy’ at least or a little or, more to the point, ACTIVE CONSUMER INVOLVEMENT will determine the best possible care for each individual. An aware consumer may actually be more cognisant of their condition than would be a mental health professional, although working together with the expertise of the practitioner(s), especially in the early phase (which may be a decade or more in duration), is probably the preferred option. Treatment really does need to be tailor-made in order to give the best fit for the patient. Another advantage of genetic advances could be that a more accurate diagnosis is made earlier (in my case it took 7–8 years for a diagnosis to be made and the psychiatrist did not bother to inform me of it). So, I believe that we need to know our illness at least a little so that we can deal with it most effectively. Otherwise, might it not become a case of hit-and-miss?
There is also the matter of balancing private and public rights. Which should be prioritised? Care often becomes coercion when it is deemed that public rights are more important than those of the individual. The elements of CHOICE and COERCION are critical and would need to be assessed on an individual basis. Counselling, choice and confidentiality would all have to be considered. Laws would have to protect carriers to ensure that they are not discriminated against in employment, health insurance or social situations.
As with anorexia nervosa, bulimia and obsessive-compulsive disorder, GREATER PUBLIC AWARENESS, UNDERSTANDING and KNOWLEDGE are NECESSARY so that the general population (as well as prospective consumers) know what they are likely to be in for (hence my children's and my ‘60 Minutes’ stint). This is particularly true if a patient's condition goes untreated for too long. My episodes or relapses were, in fact, becoming more severe and requiring longer stays in hospital before I finally appreciated the need to take medication every day.
The benefits of genetics research could then include circumventing years of chaos, confusion, uncertainty, pain and further (brain) damage, and the possible worsening of people's schizophrenia could be avoided. Thus, there would be the potential to improve the health of people with schizophrenia. The personal growth associated with having an illness such as schizophrenia may be lessened, however, such maturity tends to come at a heavy cost. Families and the community could be spared the ‘ripple’ effect of the illness. The disruption and distress to so many lives is definitely an aspect to consider. As people with schizophrenia are now out and about in the community, more of us will now be having children of our own. Finally, I asked my son Denis what he would do if a genetic test was available. His response was that it would not really bother him (i.e. the prospect of having schizophrenia). This is because of his deep and extensive understanding and experience of the illness. If he took the test then it would be more out of curiosity than out of fear. Further, on the question of possibly aborting ‘defective’ foetuses, his response was that a move in this direction might take away the ‘I’ of society, which, he suggests, is already dwindling. Denis has an advantage, in one sense, to have grown up surrounded by schizophrenia so that he does not have that fear of the unknown that many who haven't grown up in the context of schizophrenia might have.
If the equation were to be: GENETIC TESTING → EARLY INTERVENTION → LESS SEVERE COURSE → ‘MILDER’ FORM OF ILLNESS → ‘MILDER’ TREATMENT REQUIRED → LESS DISABLEMENT + FEWER LIMITS ON LIFESTYLE, then this would be a very good thing. However, in the real world, it might not be such a simple matter, given the element of unpredictability and the ‘human’ factor. But it would be irresponsible not to at least make some attempt to assist those who may be at risk.