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Editor’s Note: The following are examples of ethical questions that
have been raised in scientific journal articles and similar sources. Some
are based on actual events, while others are hypothetical.
Conflicting Obligations
Doctors who treat HIV-infected patients and who also serve as
investigators for clinical trials of HIV therapies may find that these two
roles sometimes conflict, posing ethical problems.
In Australia, a small group of doctors – six general practitioners
and four hospital doctors – were interviewed during the course of a
clinical trial of an HIV vaccine about the tensions of being both
clinicians and research investigators in the context of HIV medicine. The
patients’ interests and the research goals were sometimes at odds.
As a clinician, the doctor’s priority is to care for the immediate
welfare of his or her patients. As a research investigator, the doctor’s
priority is to identify the potential benefits of experimental medication
and weigh them against potentially harmful effects. The usual way of doing
the latter is through a double-blind randomized placebo-controlled
clinical trial where neither doctors nor patients know whether the
patients are receiving an experimental treatment or a placebo.
Such trials offer hope, especially to those people whose health is
deteriorating. As one doctor remarked, there is a belief among patients
"that trials are not trials but are access to new and innovative
therapies." But a physician’s ethical duty is to explain clearly
that trial participation is an experiment: that new treatment may be
effective, but this is by no means guaranteed. In fact, the experimental
product may prove to be ineffective or more toxic than anticipated.
Also, some patients attempted to move from one trial to a newer trial
to obtain the latest therapy. Doctors did not encourage this. But, as
clinicians, they felt that their first responsibility was to their
patients. Working "in the patient’s best interest," some
admitted to withdrawing patients from an ongoing trial and sometimes
enrolling them in another.
In general, it appeared that the doctors wanted to be good scientists.
But they were sometimes overwhelmed by the immediate needs and desires of
their patients, and all the doctors interviewed ultimately placed the
immediate interest of their patient before the outcome of the trial.1
– Kim Best
The Right Not to Know
During research to find ways of preventing the transmission of HIV from
an infected mother to her newborn, volunteer pregnant women who tested
positive for HIV were encouraged to inform their partners about their HIV
status. However, some women who did so were chased from their homes or
beaten as a result.
After giving their informed consent, volunteers for the three-year
study were tested for HIV, and received counseling before and after the
testing. For women who tested positive for HIV, counseling was intended to
help them cope with the disease, prepare for the future, and reduce risky
behaviors.
In addition to encouraging them to inform their partners, HIV-positive
women were asked to bring partners to the clinic for more counseling.
During the first two years of the study, 243 HIV-positive women
participated and 66 of them shared test results with their partners.
Twenty-one of those 66 returned with their partner to be tested and
counseled (only five of the men were HIV-negative). However, as a result
of revealing their status to their partners, 11 women were chased away
from their home or replaced by another wife, seven were beaten, and one
committed suicide.
Alarmed by the violence against women, the researchers changed their
policy on counseling. During the final year of the study, women recruited
for the research continued to receive information about HIV but were not
given an appointment to receive the results of their HIV test. Instead,
they were told that they could ask for the results, if they wanted to know
– and only 109 out of 311 women with a positive HIV test did so. The
scientists reasoned that the change was a safer, more ethical approach,
since it helped protect the women from violence or stigma.
On the other hand, by not requiring the women to learn about their HIV
status, it is conceivable that some HIV-positive women who did not learn
about their status might spread the disease. The study’s authors
reasoned that most women in the study (about 80 percent) came from stable
relationships in which the women were presumably faithful to their
partners, and their partners were likely to be infected already. For these
women, encouraging them to disclose to their partners that they were
HIV-positive might only provoke abuse from the men, who might also take
another wife and continue to spread the disease.2
– Ellen Devlin
ECPs in Advance of Need
Emergency contraceptive pills (ECPs) should be included routinely among
contraceptives that providers discuss with clients, including adolescents,
say medical researchers from the University of Chicago, Illinois.3
The researchers offer the following hypothetical illustration of how
failure to discuss ECPs might cause more harm than good:
Ms. Green is a 16-year-old who has been sexually active for about a
year and started using birth control pills about six months ago. She tries
to take the pills regularly, but admits to forgetting them sometimes. She
says that, if she were to become pregnant, she would not have an abortion
because she believes abortion is morally wrong.
In considering whether to tell Ms. Green about ECPs in advance of her
needing them, several ethical issues arise. Because Ms. Green is not yet
an adult, she may not be legally old enough to make an informed decision
by herself about using ECPs. Second, since adolescents tend to use
contraception sporadically, a provider might worry that telling Ms. Green
about ECPs would decrease her adherence to her oral contraceptive regimen.
This would put her at greater risk of an unplanned pregnancy.
But Ms. Green’s previous use of birth control pills suggests that she
is fairly responsible, and it seems unlikely that she would suddenly
change her behavior, the researchers said. (There is no evidence that
women who know about emergency contraception are less likely to use a
regular form of birth control.) Also, it is precisely because of their
irregular use of contraception that adolescents like Ms. Green can benefit
from being told about ECPs before needing them.
A final compelling reason to discuss emergency contraception with Ms.
Green is "her belief that abortion is morally wrong," the
researchers noted. "For this patient and others who do not find
abortion compatible with their moral framework, knowing that emergency
contraception works as a contraceptive and not as an abortifacient
provides another chance to avoid an unwanted pregnancy after unprotected
intercourse."
– Kim Best
When to Intervene
In studies designed to identify problems in reproductive health service
delivery, researchers may visit delivery sites and witness poor quality
care that seems, for ethical reasons, to require their intervention.
A provider, for example, may drop an intrauterine device on the floor,
pick it up, and – without sterilizing it – prepare to insert it in a
woman.
The observer, in this case, might hesitate to act, since intervening
might influence the research results. However, the safety of any client
who is clearly at risk outweighs researchers’ needs, and the observer in
this case should intervene to protect the client, write the authors of a
Population Council handbook about using situation analysis to assess
family planning and reproductive health services.4 As stated in
the Helsinki Declaration, "in medical research on human subjects,
considerations related to the well-being of the human subject should take
precedence over the interests of science and society."5
Such a case is relatively rare. But troubling ethical concerns can
still arise when observers witness less serious service quality problems.
In fact, observers often are aware of mistakes, lapses, and
misinformation, and interviewers often find that clients are not told
essential information about their selected contraceptive.
In such cases, should observers intervene? "Clearly, doing so [in
every service delivery situation] would prove so intrusive and detrimental
to rapport with staff as to ruin the possibility of gathering useful
information for program and policy decision-making and thus would greatly
lessen the ability to make needed improve-ments," conclude the
authors of the Population Council handbook.
Given the ethical dilemmas that observers may face in these cases, the
Population Council authors recommend that a list of situations that might
require some form of intervention be developed and discussed with relevant
local authorities before such studies begin.
– Kim Best
Respect
In many cultural settings, lack of clear ethical guidelines and
protocols for use in medical education and clinical practice – coupled
with the high status that physicians enjoy – can result in providers
disregarding women’s autonomy and compromising their right to receive
fair treatment in matters of reproductive health.
A study conducted in 1997 and 1998 at the teaching hospital of one of
the major medical schools in Cairo, for example, clearly demonstrated that
women’s autonomy and right to information were neglected in the teaching
process.6 The following exchange, observed during the study, is
illustrative:
Doctor (to a woman listed on that day’s surgery list for a
hysterectomy): Do you want any more children?
Patient: I have three, thank God.
Doctor (to attending staff and students): That is enough of
consent. If she is calm and rational, you can explain the operation to
her, or better just tell her husband.
Besides belittling women, medical staff and students commonly excluded
them from conversations about their health by speaking in English, a
language unknown to the patients. The study found that the women, often
treated as instruments of learning, were denied the right to participate
and share their knowledge, as illustrated here:
Doctor: How many children do you have?
Patient: Three, and thank God they are all well.
Doctor: I didn’t ask you that.
Patient: I am sorry.
Doctor: And do you use a method (contraceptive)?
Patient: I wanted to tell you that I breastfeed.
Doctor: Did I ask you that?
Patient: Sorry.
In fact, this woman had a reproductive tract infection. She wished to
tell the doctor that she does not use or want to use contraception because
she is breastfeeding and does not menstruate during lactation. Instead, he
refused to listen to her and insisted that she come back to be fitted for
an intrauterine device, despite her infection.
The project investigated how clinical instruction in obstetrics and
gynecology influences students’ perceptions of women’s reproductive
health and rights, and focused on interactions between female patients and
male physicians. Fifth-year students and their instructors were observed
during 100 clinical teaching rounds. The research also included interviews
with 50 medical students and 14 of their instructors. Members of the
Reproductive Health Working Group of the Population Council and other
colleagues undertook the study, which was financed by a grant from the
Dutch Overseas Development Corporation.
Egyptian medical students who were observed and interviewed in this
study often received no instruction or inappropriate instruction about
consent for reproductive health examinations and procedures. Nor did they
provide their patients with information about physical examinations by the
teaching faculty or clinical rounds where their case histories might be
presented. Patients were expected to be passive and were believed to be
incapable of understanding their own health and disease conditions. Three
of every four students interviewed thought that women are indecisive and
need help in making choices (particularly contraception), and nearly two
of every three students thought that women could not handle complicated
information. Most important, in 87 percent of cases reviewed in clinical
rounds, patients were not informed of their diagnoses, although a
similarly high percentage did receive follow-up and treatment.
The study showed that explicit instruction about the ethics of clinical
practice and patients’ rights was rare. Most students learned by
watching teaching staff interact with patients. This often led students to
believe that providing a medical intervention was their primary mission,
while respectfully interacting with patients was irrelevant.
– Kim Best and Dr. Hania Sholkamy
Dr. Hania Sholkamy is an assistant professor at the American
University in Cairo, Egypt.
References
- Hales G, Beveridge A, Smith D. The conflicting roles
of clinicians versus investigators in HIV randomized clinical trials. Cult
Health Sex 2001:3(1):67-79.
- Temmerman M, Ndinya-Achola J, Ambani J, et. al. The
right not to know HIV-test results. Lancet
1995;345(8955):969-70.
- Bell BS, Mahowald MB. Emergency contraception and the
ethics of discussing it prior to the emergency. Women’s Health
Issues 2000;10(6):312-16.
- Miller R, Fisher A, Miller K, et al. The Situation
Analysis Approach to Assessing Family Planning and Reproductive Health
Services: A Handbook. (New York: The Population Council,
1997)19-20.
- Declaration of Helsinki. Ethical Principles for
Medical Research Involving Human Subjects. Adopted by the 18th
World Medical Association General Assembly, Helsinki, Finland, 1964
and as amended by the 52nd World Medical Association General Assembly,
Edinburgh, Scotland, 2000.
- Sholkamy H. ‘Old men’s tales’ or medicine,
physicians’ perceptions of gender and reproduction in Egypt. The
International Union for the Scientific Study of Population Seminar on
the Production and Circulation of Population Knowledge,
Providence, RI, March 20-24, 2001.
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