May/June 2016
21
HEALTH LAW
authority that I represented. They wanted to
know how I was unmarried at 29; whether
I had a boyfriend and if he was nice to me;
and—heartbreakingly—on the last day, they
wanted to know if I understood what they
did. “They think you must not know,” Jabes
explained. “They think that because you
take tea with them and talk with them, that
you don’t know they are prostitutes.”
The legacy of colonialism means that there
is a distinct class structure in Kenya, further
complicated by tribal history. A person
of any social standing would never go to
Majengo—not only because of the crime
there, but because of its associations. The
enormous social gulf between the residents
of Majengo and the professional class is
worsened by sensationalistic journalism
exploiting the poverty of the slums.
8,9
In November 2003, an article in the
Observer
10
described one woman’s life in
Majengo as “sordid beyond imagination…
Agatha is 52 and a grandmother, but still
has sex—when she is lucky, she says—with
40 clients a day.” The project manager of
the Kenyan AIDS Vaccine Initiative, Dr.
Omu Anzala, is quoted as saying, “The
likes of Agatha have been monitored
scrupulously for years.”
I had the opportunity to attend a two-day
workshop in Nairobi, sponsored by a U.S.
university, designed to educate Kenyan
researchers on the operation of ethics
review committees. During one session,
we discussed why both the Declaration of
Helsinki and the Common Rule distinguish
certain groups of people—such as children
and prisoners—as “vulnerable” and needing
special protection. The participants were
then asked if there were groups of people
in Kenya who were similarly vulnerable. I
suggested that prostitutes could be reluctant
to report mistreatment since their work, and
possibly their presence, in the country was
illegal. One male Kenyan doctor responded,
smirking, “They are taking
our
money!
We
need protection from them!”
Researchers ought to know their subjects.
How can we look out for people’s best
interests unless we know we know who
they are? This includes not only knowing
descriptive facts about them, but also
recognizing that the circumstances under
which they live may be out of their control.
How will we know if their participation
is truly voluntary unless we find out what
kind of options they think they have? If
they are already doing things that they wish
they weren’t, like prostitution, maybe that
indicates that their ability to exercise self-
determination is low.
After all, isn’t participation in research
supposed to be basically an altruistic act?
How likely is it that you’ll feel altruistic
when your life includes being beaten by
men who refuse to pay? Why would you feel
social responsibility when society scorns you?
But when I asked Jacinta and Vedestina
whether they would stop the blood draws if
they could, I realized my cynicism.
Both said that they would be
willing to help the doctors cure HIV, but
that they wanted more respect, and they
wanted to know what exactly happened
to their blood. “If they want our blood,”
Vedestina said, “then they should be honest
and ask for it.” Despite their own dismal
situation, they endorsed the bigger picture.
Vedestina clearly wanted the researchers
to value her consent—does it follow that
she wanted the kind of detailed informed
consent process mandated by IRBs? Neither
woman was accustomed to such formality.
The respect they wanted to feel from the
researchers probably would not be conveyed
by an unfamiliar consent procedure. It
seems to me that a meaningful act of respect
is one that is understood as such.
It has been argued that one way to establish
“procedures that are both ethically sound
and culturally sensitive… is through careful
and sustained community involvement in
research.”
11
But is it appropriate to assume
that cultural sensitivity ensures ethical
soundness? Can “a charge of exploitation…
be defeated simply by pointing out that
persons from the developing country
8. Karuoya N, “Poverty Leading to Prostitution.”
The Nation
, December 18, 1999, Nairobi.
9. Makokha K, “Prostitutes the Losers in AIDS Vaccine
Saga.”
The Nation
, October 20, 2000, Nairobi.
10. Carlin J, “Hope for AIDS Cure as Prostitutes
Defy Virus in the Slums.”
The Observer
,
November 23, 2003.
11. Lindegger G, and Bull S, “Ensuring Consent in
a Developing Country Context.”
Science and
Development Network,
2002.
I asked if they knew why their blood was
being taken. “It’s for HIV,” Jacinta said. “I
know because I heard it on the radio
two or three years ago, that doctors
were interested in women from
Majengo because we do not have
HIV and that the doctors wanted to
know why we do not. The radio said
that they wanted to study the blood
from the women in Majengo. The next time
I went to the clinic, I asked the person who
took my blood, ‘Is this for the doctors on the
radio?’ and he became very angry and told
me never to talk about it with anyone.”
