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Oct-Dec2004-12(4)
CASE STUDY RESPONSE
Purity of standards: at what
price?
Pierre
Laplante
The dilemmas presented by Mr Rajan Patil, although
not new, are difficult to resolve with straightforward answers.
The account reminded me of similar communities with
whom I have interacted. For example, among some Aboriginal Canadians,
traditionally hunter-gatherers, the chief was identified as the one most capable
of assuring the tribe's survival-by his skills and his ability to discern and
accommodate the spirits prevailing in a given situation or time. With the
arrival of the Europeans and the consequent impact on resources, the chief
became the person most capable of 'playing the game'. This could mean corruption
of the principles guiding the choice of a chief.
How leaders are chosen, and who they represent is
not clear in many societies even today. In such situations, would it be
judicious to take the community leader's approval as representative of the
community?
Mr Patil asks: Is it ethical to tamper with the
value system of a tribal community? The question could be rephrased as: Is it
permissible to allow anyone to engage in destructive behaviour just because they
think that such behaviour is normal? Some cultures tolerate child and spousal
abuse. Is this acceptable just because it is cultural? Care must be taken to
guarantee the integrity of the research and to be sensitive to the dynamics of
the local culture.
Using only the standard of individual consent poses
risks for participating individuals. It would be interesting to know how the
tribe responds to a member who goes against the leader's direction.
Researchers must be clear about the goals, values
and standards that govern any group or effort. Violation of community norms, by
seeking individual consent while sidelining the community leader, might subject
individuals to retribution of a kind that researchers might not foresee.
Unwillingness to bear such responsibilities may pose problems with
community-based research. Further, research without an intervention or follow-up
plans gives the participants no opportunity to contact the researchers, should
the need arise.
Research of this type will inevitably come across
people needing health care. Is it ethical for researchers to design a project
without tangible benefits, such as improved health care access, to research
participants or the community? Aboriginal Canadians have frequently told me, 'We
have been researched enough!'
Inducements may not be ideal and have their own
pitfalls, but do they compromise the research? Should people be deprived of
life-saving health care because giving it in the research context might be seen
as an inducement? Clinical trials worth millions of dollars were stopped halfway
when the trial drug performed well; it was unethical to deprive the control
group of the more effective drug. People's lives are more important than
additional knowledge that might be gained by continuing the trial. Therefore,
health care provision must be built into the research budget, not added later.
Another issue is that of 'maintaining privacy'
during interviews with research participants. The public manner in which the
research team worked resonates with the traditional functioning of Canadian
Aboriginals. The use of the 'talking circle' and the 'talking stick' is
essential to tribal decisions and reflects their appreciation of public action
with everyone having a say.
Finally, one should consider whether exceptions to
research guidelines should be anticipated, discussed and decided upon before the
work starts, or whether they can be decided on the spot. The case study does not
indicate that preliminary discussions took place. The statement that community
consent would mean 'phenomenal time saving' raises doubts about the researcher's
understanding of principles of research ethics.
Pierre Laplante, Staff Nurse, King Faisal
Specialist Hospital and Research Centre, MBC 56, Unit F-1, PO box 3354, Riyadh
11211, Saudi Arabia. e-mail:pierrepeter@justice.com