Consumer Perspectives

1
Consumer Perspectives

• Excerpted from the DVD Ethical Dialogues in
  Behavioral Health Research, History and
  Principles

2
Early History of BH Research

• Two stories to tell
• story of scientists with the power, the hubris
  and the vision to explore human psychology for
  the betterment of humanity
• story of the disempowered, the lost and rejected,
  the psychotic and the dysfunctional, who were
  abandoned to the streets and institutions

3
Early History Neuroscientists

• Paul Broca worked with epileptics in Paris in the
  1860s
• Carl Wernicke probed the brains receptive
  language center in Germany in the 1870s
• Wilder Penefield 70 years later performed brain
  surgeries under local anesthetic to draw a map of
  bodily sensations
• None were constrained from their work

4
Modern History Hoch

• Paul Hoch, Director of Research, New York State
  Psychiatric Institute (1950s-1964)
• gave LSD and mescaline to people with
  schizophrenia to produce delusions and
  hallucination in order to develop a model of
  psychosis in humans
• studied whether electroshock and lobotomy would
  block drug-induced psychosis

5
Modern History Hoch

• Nobody questioned the ethics of such experiments
• Hoch was praised for his work and the exciting
  possibilities of such experiments

6
Modern History Hoch

• APA National Convention (1950)
• Hoch told a packed audience how the research
  subjects suffered intensely in these experiments
• Justified this type of research as helping to
  establish psychiatry as a solid fact-finding
  discipline.
• Such research was halted in the 1960s when the
  federal government decreed that psychedelic
  agents were dangerous and the NIMH discontinued
  funding

7
Modern History Challenge Studies

• Symptom exacerbation experiments were accepted
  practice (1960s-2000)
• scientists tried making people with schizophrenia
  worse through the use of sensory isolation, sleep
  deprivation, and the administration of other
  drugs that would produced profoundly disorganized
  regressive states

8
Modern History Challenge Studies

• dopamine was administered to intensify psychotic
  symptoms in first break patients coming into
  emergency rooms and people who had recovered
  sufficiently to be discharged.
• even though patients were then given neuroleptics
  to ease symptoms, some were still psychotic a
  year later

9
Modern History Challenge Studies

• Veterans Administration Medical Center (1987)
• 28 people with schizophrenia abruptly withdrawn
  from neuroleptic medication and injected with
  L-dopa to discover who would fall into a relapse
  the quickest
• As atypical antipsychotic medications came to
  market, researchers turned to new chemical agents
  such as ketamine, the chemical cousin of angel
  dust, to exacerbate symptoms

10
Criticism of Challenge Studies

• Advocates scientists criticize challenge study
  protocols
• Response People with schizophrenia volunteered
  for these experiments
• people have a right to make a contribution to
  curing mental illness
• stigmatizing to think that people with mental
  illness cant weigh risks and decide

11
Criticism of Challenge Studies

• People were misled
• told that the experiments would make them sicker
• told that the experiments were to measure various
  brain hormones or researchers were trying to tell
  if regular medications were safe
• risks were listed as increase in blood pressure
  or upset stomach, but no side-effects were
  anticipated at the doses administered

12
Modern History Research Participants

• Loss of trust
• Little faith in drug research protocols

13
Discussion Group Participants

• Misunderstood nature of past abuses and current
  studies
• Key Lessons
• Researchers need to do better in obtaining
  informed consent so that participants understand
  what is being done and not being done
• Willingness to believe that people were being
  injected with live HIV virus speaks to mistrust
  of research community

14
Modern HistoryNew Wave of Reforms

• Media and senior government officials have given
  serious attention to cases of ethical research
  violations that have contributed to the deaths
  of participants
• Prestigious research programs have been
  temporarily suspended
• Accreditation of human subjects protections begun

15
Modern HistoryNew Wave of Reforms

• BH research has received much less attention
• Subtle forms of abuse still go largely
  unrecognized
• When asked about their personal research
  experiences, discussion group responses were
  mixed

16
Modern HistoryNew Wave of Reforms

• On May 16, 1997, President Clinton apologized to
  the last surviving Tuskegee study participants
  and families, the African-American community, and
  the American people as a whole for the loss, for
  the years of hurt.
• Symbolic gesture

17
Modern HistoryNew Wave of Reforms

• Government convened a meeting at the CDC in
  Atlanta, GA (1997)
• 300 people of color, native Americans, and people
  with mental illness and substance use problems
• dialogue about how to rebuild trust in science
• Report to the President detailing the importance
  of the meaningful inclusion of research
  participants and their communities in the
  research process

18
Modern History Research Participants

• First National Summit of Mental Health Consumers
  and Survivors (August 25-29, 1999 in Portland,
  Oregon)
• Consumer/survivor research platform research
  policy positions from the perspective of mental
  health consumers
• action plan research participant protections,
  humane research, and participant inclusion in all
  aspects of the research process

19
Modern History Research Participants

• Suicide of a young man participating in a drug
  trial conducted by a California University
  mobilized family members of people with mental
  illness to question drug wash out protocols and
  placebo trials

20
Collaboration of Scientists Research
Participants

• Mental health consumers who are researchers or
  hold other roles in research organize local and
  national efforts to educate and dialogue with the
  scientific community
• Growing numbers of researchers and policy-makers
  have begun to value the collaboration of research
  participants
• Discussion Group
• Dont do anything to harm the people
• Touch of humanity goes a long way
• Show a little love to the researchee