22
THE BULLETIN
OUT OF THE ARMCHAIR, CONT.
where the research took place had a role
in designing, approving, and conducting
it”?
12
It is not impossible for community
standards themselves to be exploitive and
unfair. “While giving due recognition
to the importance of cultural values and
practices, or ethos, however, there is the
danger of assuming that these norms
and practices are in themselves ethical,
absolute and ahistorical.”
13
If a country
has a history of brutal government or
harsh social and economic conditions, its
standards may reflect it. Racism, classism,
and capitalistic ideals are a few of the after-
effects of colonialism in Kenya. If members
of ethical review boards have internalized
these “values,” their opinions of protocols
will likely demonstrate it. How can we talk
of beneficence in a country that does not
practice it?
Although the aim of medical research is
not social reform, in order to conduct
it ethically in developing countries, a
“broader moral agenda is required.”
14
This means that the design and conduct
of research must take into account
the political, social, and economic
circumstances of subjects. Indeed, it may
also mean that researchers have a duty
to ameliorate those circumstances.
15,16
Allegations of “ethical imperialism” might
be thwarted if members of the vulnerable
population guide these attempts. Charges
of paternalism will likely prove harder to
counter; such charges, however, may not
diminish the moral worth of the effort.
Conclusion
What I found out about medical research in
Kenya cannot be said to be representative—
nor yet can it be dismissed as anomalous.
The picture that emerges from my
haphazard journey is far from complete. But
are the pictures yielded by conventional
research studies any more complete?
Will Morris’s or Jacinta’s or Vedestina’s
experiences be included in any report?
There are limitations on what we can know
about another person’s experience and
how we can know it. And sometimes it
seems like we know more about a person’s
capacity and best interests than she knows
herself. But this does not lessen our duty to
ensure an environment in which the subject
feels comfortable to speak, and to listen.
Although honoring this obligation will not
resolve all difficulties,
17
it is perhaps the
best starting point for developing a cross-
cultural ethic to guide research.
All of our practical knowledge is necessarily
fragmented, partial, and positioned. What
we claim to know about how to behave
relates to who we are and what we’ve
experienced. In this sense, ethical knowledge
is enhanced by the inclusion of people with
diverse perspectives. Bioethics, as a pragmatic
science organized around ideals, ought to
aim at gathering as many bits of knowledge
and articulated perspectives as possible. As
long as bioethics strives not to convert but
to address and protect a variety of people
in actual situations, we must endeavor to
educate ourselves about the positions and
perceptions of others. If we succeed in this,
we may more accurately realize what the
abstract principles of respect, beneficence,
and justice look like in the real world.
Acknowledgements
My thanks to those who reviewed this article at the
Center for Bioethics, University of Pennsylvania,
USA; to the Center of Bioethics and the University of
Pennsylvania Law School for funding this endeavor;
and to Marta Storwick, Jabes Otieno, Marcus
Donner, Islam Ahmed Kabocho, the African Center
for Technology Studies, and to those who agreed to
share their experiences with me.
12. Macklin R, “After Helsinki: Unresolved Issues in
International Research.”
Kennedy Institute of Ethics
Journal,
2001; 11(1): 17–36.
13. “HIV Vaccine Trials: Critical Issues in Informed
Consent.”
14. Benatar SR, and Singer PA, “A New Look at
International Research Ethics.”
British Medical
Journal
, 2000; 321: 824–826.
15. London L, “Ethical Oversight of Public Health
Research: Can Rules and IRBs Make a Difference
in Developing Countries?”
American Journal of
Public Health
, 2002; 92(7): 1079–1084.
16. Ironically, for some of the prostitutes in Nairobi,
helping them find other means of income may put
them at risk: several women previously resistant to
HIV succumbed to the virus after a break from sex
work.
See
Kaul
et al.
2001.
17. One bioethicist suggests that exploitation may
be avoided by allowing subjects greater voice.
“Wouldn’t it be better to allow the parties
concerned to define for themselves their own
interests?” (Brunet-Jailly 1999, p.11) This idea
assumes that subjects are able not only to define
their interests but also to assert them verbally to
researchers. I believe this assumes too much—while
bioethicists and researchers must listen to subjects,
it does not follow that subjects will articulate all
considerations relevant to their well-being.
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About the Author
Nicole Li
obtained her JD and Master of Bioethics
from the University of Pennsylvania. Nicole is the
principal attorney at The Li Law Firm, which
represents licensed health care professionals. She
effectively defends against adverse licensure action
and post-payment audit demands, and assists with
establishing and maintaining credentials with payers.
She may be reached through
.
This article originally appeared in a slightly different
form in the
New Zealand Journal of Bioethical
Inquiry
(JBI 2004 1(1); 20-26).
nlm.nih.gov/pubmed/16025594.
