Transcript Group 1 - Global Forum On Bioethics in Research

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