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

Objective: To outline from a carer's/family's perspective the ethical conce rns raised by research into screening for factors in people at risk of schi zophrenia. Method: The need for families and carers of people with schizophrenia to se ek a voice in the ethics of research into schizophrenia prevention is descr ibed. The possibility that societal myths, literature and language have cre ated sustained ignorance about psychotic illnesses, resulting in fear and/o r prejudice, is considered. The impact of these factors greatly exacerbatin g the burden of schizophrenia for sufferers and their families is discussed . Results: There is evidence that people with schizophrenia share the disadva ntages of other disempowered minorities. It is necessary for ethical constr aints 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 in to schizophrenia should include carer/family input. From a carer/family per spective, research into schizophrenia should be directed at ameliorating th e effects of the illness by advancing methods of early diagnosis and by fin ding suitable treatments that do not carry punitive side-effects, thus allo wing people with the illness to reach their potential in all aspects of the ir lives. Therapeutic relief combined with the elimination of social ostrac ism would greatly benefit people with schizophrenia and their families.