20
THE BULLETIN
OUT OF THE ARMCHAIR, CONT.
immediately clear, upon producing the
paper, that it worsened the social dynamic.
Already fearful, the women did not want to
sign their names to anything and they did
not want to keep a copy for themselves—they
had no place to keep it safe from other eyes.
Although my endeavor was not the sort
of research the Common Rule or the
Declaration of Helsinki addressed, I had
accepted as standard that proper consent
generally entailed documentation.
5
In the
present situation, however, it seemed that
signed forms served my interests more
than theirs.
Ultimately I met with them four times, for
about two hours each time.
Vedestina was 33, but looked much younger.
Jacinta, 42, did most of the talking. They,
like most women in Majengo, are familiar
with the nearby Sexually Transmitted
Infection (STI) Clinic, where gynecological
exams and STI treatment are free. In 1985,
Jacinta said, they were urged to go to the
clinic for free condoms and information
about AIDS. Beginning that year, in
addition to regular treatment, three vials of
her blood are taken every four months.
She had been told to go to the clinic by
her neighbors; like Morris Bollo, certain
influential women in Majengo had been
enlisted to persuade their neighbors to
participate. As Jacinta put it, “We didn’t
look for them, they were looking for us.”
She estimates that she was among 2,000
women recruited, based on the list of
names subsequently posted on a wall in
the clinic for everyone to see. This figure
matches roughly with the 1,864 sex workers
reported to have been tested in Majengo.
6
Vedestina began going to the clinic in
1994, when she moved to Majengo. “They
ask questions when they take out your
blood, but they don’t ask questions to get
normal treatment,” She said. What kind
of questions? I asked her. “They ask how
many men you see every day, what you wash
with, what you eat, where your brothers and
sisters are, where your children are. And
they don’t say why they ask these questions.”
I asked them if they had given consent
for their blood to be taken—but even after
rephrasing the question several times
with Jabes’s help, they did not seem to
understand what I meant. Finally, I asked
if they had ever refused. Jacinta laughed.
“How can you say no to a doctor?” she said.
“They are giving us free medical care. If I say
no to them, maybe they will say no to me.”
I could not tell how much the lack of
informed consent bothered these women.
Were they satisfied to receive medical
treatment, adroitly using the system that
was using them?
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.”
He was not the only one who had warned
against discussing the blood draws, they
said. No reason was ever given. The British
Medical Association notes, “Excessive and
prolonged secrecy is a factor common to all
forms of abusive medical research.”
7
Even
if the lack of consent did not trouble the
women as much as it troubled me, their
objection to being silenced was evident.
It seems to me most likely that the order
for secrecy came not from the research
team, but rather from the local people
employed to manage the human subject
population. Maintaining participation
is easier if the women are scared. Also,
secrecy inhibits knowledge. If these women
don’t know about compensation, the
money may get no farther than the people
who are supposed to distribute it to them.
Classism, sexism, and disdain for prostitutes
work together to increase the vulnerability of
these women while they are at the STI clinic.
The clinic workers know that the women
are sex workers; they know that their STIs
have been treated; they know that some
are HIV negative; and so, sometimes, these
men approach them for sex at the clinic.
Once, Jacinta told me, one of the doctors
locked himself in the exam room with a
woman—she began to scream, Jacinta said.
“She screamed and screamed, and finally
the doctor unlocked the door and let her
out. She made that doctor ashamed.” This
reversal of power made both women laugh.
I asked why the women continued to
go to the clinic when they were so badly
treated. “Some women tried to stop going,”
Vedestina said. “But then people came to
their house and shouted at them. They
told them that they would be reported to
the police if they did not return. They said
they would tell the police that they were
prostitutes so they would be deported.” It
was then that I learned that most of the
women in Majengo are not Kenyan; they
had come from Tanzania in search of work.
Both Jacinta and Vedestina had come
to Nairobi to support their children and
dependent family members back at home.
The women who had recruited for the
study initially had all left Majengo. There
were rumors that those women had
received money that allowed them to move
away. There were also rumors that the
money they received was supposed to have
been divided up among the women in their
groups. Neither Jacinta nor Vedestina have
received anything.
Corruption and disorder exist in Kenya.
The more people working between the
research team and the human subjects,
it seems to me, the more likely it is that
information gets lost and compensation
gets stolen. Human subjects need
protection not only from the research itself,
but also from the often large number of
people required to run it.
Throughout our conversations, I asked
the women if they had questions for me—I
wanted as much as possible to diminish the
5. 45 Code of Federal Regulations 46.
6. “Prostitutes Offer AIDS Vaccine Hope.”
7. British Medical Association, “Research and
Experimentation on Humans.”
The Medical
Profession and Human Rights
(London: Zed Books,
2001), 205–240.
