18
THE BULLETIN
HEALTH LAW
Out of the Armchair
A bioethics student searches for
practical knowledge in Kenya.
By Nicole Li, JD
I
n 1997, an editorial published in
The
Lancet
declared that the qualifications
of those advising medical research
should be “rooted in clinical practice
and not in armchair moral philosophy.”
1
Driving the point home, the editorial
went on, “Departments of ethics that are
divorced from the medical profession,
wallowing in theory and speculation, are
quaintly redundant.”
Although the editorial’s claim that ethical
dilemmas can largely be “solved by appeal to
principles fundamental to medical practice”
seems to gloss over true conflict, I took its
admonition to heart. Perhaps the reason
I lacked certainty in my moral judgments
about the conduct of international research
really was connected to my minimal clinical
experience. Perhaps all that was needed
to dispel my confusion was a personal
understanding of what’s involved.
Having studied philosophy, law, and
bioethics, I had the theoretical background
from which to approach the ethical debates
regarding medical research. I sought practical
experience on an Institutional Review Board
(IRB) at the University of Washington. My
role included advocating for “community
attitudes” and screening consent forms for
clarity.
2
I was to read the forms as if I were
the common person of Washington State,
considered to have the reading level of a
12-year-old. I had lived in Washington for
20 years, and at one point I had the reading
level of a 12-year-old, so I felt fairly capable.
During the two years I spent on this board,
I noticed that more and more clinical trials
were being conducted in Africa—and my
imaginative exercise was confounded. How
could I read a consent form as if I were the
average person in Africa?
If I were to be an effective advocate and
an informed ethicist, I felt I needed a
better sense of the realities of international
research. I figured that I could do this
by sitting in on a few African ethics
committees and talking with human
subjects. So in May 2002, I got off the
ethical armchair and went to Kenya.
My project was a personal endeavor,
not a scientific one. And I found more
questions than answers. This story is not
representative—but I believe that it is
illustrative
.
Connections
Through e-mail, I arranged to meet with
Kenyan professionals involved in medical
research. It seemed that observing local
ethics committees and talking with study
participants could be easily accomplished.
But things didn’t go as planned, and soon
after arriving in Nairobi, due to a series
of mishaps ranging from bad luck to bad
faith, I found myself without professional
connections. Through chance and
generosity, however, my endeavor continued.
I learned that simply showing up at a
person’s office guaranteed at least getting
an appointment, if not a meeting. It
seemed that looking white and professional
was enough to pass the profusion of
uniformed guards, unquestioned. The
colonial legacy lives on.
Through an acquaintance, I met Morris
Bollo, a 27-year-old Kenyan graduate
student. In 1997, Morris had been one
of several fieldworkers hired by malaria
vaccine researchers to recruit subjects
from their home village. “We called them
volunteers, although we convinced them,”
he told me, adding, “I wasn’t convinced
myself it was the right thing to do.” Morris
received a certain amount of money for
each subject he recruited, and his pay
dropped if any subject withdrew from the
study. Given the incentive to maintain
enrollment and the scarcity of other jobs,
Morris admitted that he and the other
fieldworkers sometimes did not relay to
the researchers subjects’ complaints or
desires to withdraw, instead persuading
their neighbors to keep taking the pills and
going for the physical examinations.
Local people who work for foreign
researchers have something at stake.
In a society where relationships, not
individuality, define a person, they may
gain prestige from association with
Western researchers—but they also risk
straining social ties and feeling guilty
when, like Morris, their job depends upon
influencing their neighbors.
The conduct of research ought not to
play upon existing prejudices and social
inequities; it is not easy, however, to envision
how researchers in developing countries can
diminish the authority they represent. As
Lindegger and Richter noted in their 2000
article on HIV vaccine trials, “The only
really effective way of significantly reducing
the desire for social acceptance and its
effects is by reducing the relative standing of
researcher and subject.”
3
To conduct ethical
research in developing countries, under this
view, requires more than the Common Rule
or the Declaration of Helsinki let on.
Being a subject
What is it like to be a human subject?
Although I didn’t have much trouble
1. “The Ethics Industry” (editorial).
The Lancet
, 1997;
350: 897.
2. 45 Code of Federal Regulations 46. (2001)
Department of Health and Human Services.
3. Lindegger G, and Richter LM, “HIV Vaccine Trials:
Critical Issues in Informed Consent.”
South African
Journal of Science
, 2000; 96: 313–317.
