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Ethics of Potentially Dangerous Experiments
on The Queen Street Patients Council is a group of psychiatric consumers and survivors elected by consumers and survivors. We submit this position regarding the ethics of potentially dangerous research on psychiatric survivors and consumers, people who are often vulnerable and discriminated against. These considerations do not apply to non-intrusive research, such as anecdotal surveys or passive observations. Psychiatric survivors and consumers must not be sacrificed to irresponsible science. We believe non-solicited volunteer pools, rigorous informed consent agreements, and compulsory liaising with independent mental health advocates may reduce the conflicts in consent on the part of someone given a mental illness diagnosis. These measures must be made requisite to finding experimental subjects in negative-effect inducing research, if negative-effect research is to be done at all. We hope one day, biopsychiatrists will consider only doing research which seeks positive effects according to patients' self-identified needs, such as medication-detox programs, CNS-reconstruction-from-Tardive, and other much needed research. 1. Ability to Give Consent In a recent complaint and ensuing Corrections Canada investigation into LSD experiments in a Kingston prison, officials stated that even if the complainant were to have given written consent, as an inmate in solitary confinement, she could never give proper consent. She was in a coercive situation which made any consent questionable at best. Patients in psychiatric facilities are in parallel coercive situations (ex. involuntarily commitment, behaviour-based priveleges or status restrictions, restraints and isolation rooms, suspended rights based on capability, etc.). We feel psychiatric patients are not in a position to give proper consent given the conflict of being under supervision (which may result in coercive or potentially coercive situations) and wanting to promote their status, priveleges, or general acceptance by staff. 2. Volunteerism and Informed Consent Because of such limitations on in-patients' consent (and for out-patients in varying degrees), volunteers should not be scouted or encouraged while under supervised treatment because the issue of becoming an experimental subject is obscured by on-going treatment issues for the patient. An ideal volunteer would not be undergoing psychiatric treatment for at least a year before the experiments start and before offering their services (like a donation of organs), after which he or she could be approached for a particular experiment. This ideal can be used as a standard to qualify the level of capability someone has in lieu of coercion. Any such standard should be explored with the expertise of psychiatric survivors. In the event that in- and out- patients are still drawn upon for experimentation, researchers and their peers must assure advocates that such "volunteers" are not coerced, unduly led, or offered therapeutic "rewards" like priveleges for participating in research. Positive and negative effects should always be presented to all parties concerned. Volunteers must be given extensive contractual agreements (within the presence of independent counsels or paid advocates) which should be devised on principles of informed consent. 3. Informing the Volunteer We believe fully informed consent on the part of a volunteer requires he or she be told
The issue of "unknown danger" must be raised with a candidate and explained without resorting to speculation. Ignorance of detail in risk should be understood as a lack of scientific evidence about the procedure, and that this may lead to irreversible damage. 4. Substitute Decision Makers and a Definition of Potentially Harmful Research The Council believes that families and other substitute decision makers, as understood in standards and legislation on treatment, have no right to consent to experiments on behalf of a psychiatric survivor or consumer. Both treatment and research may seek to bring about the curative process, and both may fail, even bringing on negative effects. But the risks in treatment are understood more readily than those in experiments.. We define potentially harmful experiments as having primary interest in eliciting negative and/or positive effects for observational purposes. In that context, we would define treatment as having a primary interest in promoting positive effects in the individual. Consent issues are much more serious in experiments because of the gravity of danger and because the risks may complicate already risky treatment! In this light, any substitute decision making power in treatment on the part of family or others is unequal to the responsibility of submitting someone to potentially harmful research. Such responsibility should rest solely with the individual, if s/he qualifies to consent at all. Conclusion The Council believes experiments where consent is not fully informed or voluntary (based on a standard reference of coersion) is experimentation without consent. In terms of ethics or human rights, this may constitute torture. Without ethical requirements and guidelines throughout and after research, psychiatric experimentation runs the risk of re-writing the history of German biomedical psychiatry in the 1930's. We fully support a stringent ethical process for anyone interested in doing research where negative-effect risks and coerced-consent issues exist. * see an article on the history of eugenics targetting survivors, past and present, and sites on Canadian medical ethics. Home / No
Force Coalition Site / QSOS Site
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