The ethics of research into schizophrenia prevention: a carer's perspective

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.

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.

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.

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.