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Ethics of Mental Health Research Stepping out of the boundaries. Chairperson Dafina Feinholz Klip Presentor Prabha Chandra Twenty People with strong opinions. Prelude. Relevance of research in mental health
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Ethics of Mental Health Research Stepping out of the boundaries Chairperson Dafina Feinholz Klip Presentor Prabha Chandra Twenty People with strong opinions
Prelude • Relevance of research in mental health • Should always be only for their benefit and not because they are an available population • Mental health is not only psychiatry • While vulnerability is a great problem, suffering is also a great problem
Definition of Mental Health • To know the grays and not look at mental health as black and white • Mental health and illness as spectrum and to prevent naming diseases • Is mental health objective or subjective? • There is a disqualification of mental suffering
Different types of research • Milder and spectrum disorders • More severe psychiatric disorders
Mental Health Research need not neccessarily be drug research but these also need ethics review • Mental Disease Research
Ethics of Placebo use • Should we use placebos in patients with psychiatric illness? • Removal of drugs for drug free periods • Use of placebos in serious situations such as suicide
As practitioners we are looking for a drug that is better than others. • Head to head trials are more important
Methodological Issues • Measurement of end points are very subjective • Relevant research questions are not asked • Suitable research methodology • Development of technologies
As we dont have adequate methodologies there is inadequate research and sometimes poor quality research • Harm is not very well defined and more difficult to measure • Need for evidence base and systematic research before we embark on new research
Informed Consent • When so called normal people find it difficult it is even more difficult in mental illness • Tailoring informed consent procedures to different levels of competency
Administrative aspects • When psychiatric hospitals are understaffed then getting legal help and advocacy is difficult and increases vulnerability
The Marketplace • Research findings are not necessarily translated correctly when marketing of the drugs • Labelling of psychiatric conditions to market new drugs like ADD
Settings of Research • Pharmaceuticals vs needs of society • We need to find other routes of research and define better research questions rather than be dictated by one force • The most vulnerable patients have no lobby • Hence we need to set the right priorities • Need to hear the user groups about their research priorities
ROLE OF REC • Justice and Social Worth evaluation is an important role • Social worth is particularly important to prevent Me Too drugs • When there is no access to research drugs what is the relevance of that research
We have an obligation to discuss the need for pharmaceutical research • What is the responsibility of bioethics groups like our forum to discuss societal aspects of research of which pharma industry is just a part ?
If we dont raise these questions , who will? From the group sans frontiers