HIV: HOW SCIENCE SHAPED THE ETHICS

by Gayle E. Woloschak

Abstract. AIDS is a debilitating and fatal disease that was first

identified as an infectious disease syndrome in the 1970s. The dis-
covery of a nearly universally fatal infectious and rapidly spreading
disease in the post-antibiotics era created apprehension in the medi-
cal community and alarm in the general population. Questions about
how patients should be handled in medical and nonmedical settings
resulted in the ostracizing of many AIDS patients and inappropriate
patient management. Scientific investigation into modes of disease
transmission and control helped to shape the management of AIDS
patient care in such a way that ethical and protective practices could
be developed. In this article I discuss some of the ethical questions
that were addressed by appropriate scientific inquiry.

Keywords: Acquired Immune Deficiency Syndrome (AIDS);

AIDS and ethics; AIDS and scientific inquiry; ethics and decision-
making in AIDS patients; Human Immunodeficiency Virus (HIV).

HIV AND AIDS: A PRIMER

The Human Immunodeficiency Virus (HIV) has been established as the
cause of Acquired Immunodeficiency Syndrome (AIDS). The virus is an
obligate intracellular parasite with nine different genes and is a member of
the Lentivirus genus of the Retrovirus gene family—that is, it is a virus
that carries RNA as its genome and upon entry into a cell converts the
RNA into DNA using a combination of cellular and viral proteins (Finzi
and Siliciano 1998). HIV infects several different cell types, but the most
prominent cell in humans is the T-helper lymphocyte, a cell important in

Gayle E. Woloschak is a professor in the Department of Radiology, Feinberg School of

Medicine, Northwestern University, 303 E. Chicago Ave., Chicago, IL 60611; e-mail
[email protected]. A version of this article was presented at the symposium
“The Possibility of a Global Ethic: The Potential of a Religion-Science Dialogue on HIV/
AIDS” organized by the Zygon Center for Religion and Science, 29–30 September 2001.

[Zygon, vol. 38, no. 1 (March 2003).]

© 2003 by the Joint Publication Board of Zygon. ISSN 0591-2385

163
164 Zygon

the generation of immune responses to infection. The infection and even-

tual death of T-helper lymphocytes results in a drastically depressed im-
mune response that leads to the eventual development of immunodeficiency
and full-blown AIDS (McMichael and Rowland-Jones 2001; Woloschak
et al. 1997).
HIV progresses into AIDS, but HIV is not synonymous with AIDS.
Many people can be infected with HIV for decades before developing symp-
toms associated with AIDS. Generally AIDS is diagnosed based on pres-
ence of the HIV virus in conjunction with symptoms of immunodeficiency,
Kaposi’s sarcoma, and/or other problems. HIV infection generally causes
the immunodeficiency (AIDS) that leads to susceptibility to infection; it is
usually these secondary infections that cause death in AIDS patients.
Two major strains of the virus have been identified (HIV-1 and -2) with
several groups found in each strain. HIV-2 is considered to be less patho-
genic and progresses to AIDS more slowly than HIV-1, but among HIV-
2–infected people who develop AIDS, brain disease is much more common.
HIV is a model virus for maintaining maximal mutability while retain-
ing functional and replicative fitness. The degree of genetic diversity of
HIV in a single infected person is greater than the worldwide diversity of
the Influenza A virus during the height of an epidemic. This genetic diver-
sity has led to difficulties associated with treatment, including drug resis-
tance and resistance to vaccine development (Nabel 2001; Nabel and
Sullivan 2000). One concern among scientists is what this continued un-
checked diversity in HIV can lead to as the next step in disease progres-
sion. Can it lead to altered patterns of transmission of the virus, to new
types of cells being infected, to a new host range for the virus, and so on?

AIDS AND SCIENCE

Prior to the discovery that HIV caused AIDS, numerous reports in the
popular press attributed AIDS to a variety of causes. Many blamed alco-
hol and drug abuse, the gay lifestyle, or the bathhouse scene in San Fran-
cisco; there were even reports that AIDS was the result of a biowarfare
experiment gone awry and spreading throughout the American popula-
tion. Eventually, scientific research established that AIDS was caused by a
virus, and this created new panic in the general population. Typical meth-
ods of transmission of viruses had a range of possible routes of transmis-
sion. Table 1 lists common modes of transmission for typical viruses that
influenced the thinking of scientists and the general population when sci-
entific research was being done to establish the route(s) of transmission of
HIV. Clearly, containment of the virus and proposed methods of control
depended on the method of transmission. In addition, ethical handling of
AIDS patients should be determined by the actual mode of transmission
of the virus and not by imagined fears of contamination that were not
 Gayle E. Woloschak 165

based on sound scientific reasoning and logic. Table 2 provides a list of

questions that could be addressed ethically once the general mode of trans-
mission of HIV was identified. In the absence of this information, the
medical community and the population at large assumed that any and all
known means of transmission of viruses could be in operation for HIV (as
listed in Table 1), and therefore any form of containment was acceptable—
from seclusion of AIDS patients in isolated groups to widespread use of
mosquito repellants to avoiding all contact with AIDS patients for fear of
respiratory or contact spread of the disease.
Eventually, scientific research from a large number of different groups
around the world established that HIV was spread through infection
through three different routes: (1) across mucosal surfaces (predominantly
sexual and oral), (2) by injection/transfusion, and (3) by childbirth. In

Table 1. Modes of Transmission of Common Viruses

Mode of Transmission Virus

Respiratory Influenza
Contact Rhinovirus (cold), Smallpox
Ingestion Hepatitis (contaminated food/water)
Animal reservoir Rabies
Close person-to-person contact Herpes
Borne by insects Encephalitis

Table 2. Questions Determined by a Scientific Understanding

of How HIV was Transmitted
• How should patients be treated in the clinic?
• Is containment needed to protect the general population?
• Are insect/animal vectors (such as mosquitoes) a possible source of infection?
• How should contaminated materials (needles, blood) be handled?
• How should people living with those with HIV protect themselves (glassware,
meals, etc.)?
• How can lab workers doing studies with HIV protect themselves?
• What personal practices are risky (unprotected sex, shared needles), and which
are not?
• What medical practices (untested blood for transfusion, natural birthing) are risky,
and which are not?
• Are there risks for unborn babies?
166 Zygon

addition, intensive research established the parameters required for trans-

mission via each method. For example, while kissing could serve as a pos-
sible method of spread of the virus, this required open sores in the mouth
and prolonged periods of exposure. Surgical C-section procedures for child-
birth greatly reduced the infection rate for children, and breast-feeding of
the baby (an oral means of infection) was not recommended for HIV-
infected mothers. The restriction of the use of infected needles and pro-
motion of safety precautions regarding sexual activity also contributed
significantly to a slowing of the AIDS epidemic.
Many other effective and ethical responses to the AIDS epidemic were
established on the basis of information obtained by scientific investiga-
tion. The fact that HIV transmission is known to occur in intimate con-
texts led to childhood sex education and the eventual reduction of risks for
transmission. Concerted effort against the stigma of having AIDS was
now possible since isolation could no longer be rationalized as a means to
prevent virus infection; while much work still needs to be done in this
regard, working against the stigma has led to an improved quality of life
for those living with HIV and those most vulnerable to infection and has
also increased the response to the epidemic itself. People living with HIV
have been included in decision-making processes, eventually leading to
increased accountability of medical workers and scientists in the response
to the AIDS epidemic. Scientific knowledge has also contributed to the
development of methods for safe handling of the virus, thus providing safe
practices and reassurance to laboratory and medical workers. The devel-
opment of diagnostic tests for AIDS and its progression have resulted in
more rapid and effective treatment strategies and a general prolongation of
a high quality of life.

HIV ETHICS TODAY

The global impact of HIV/AIDS has been most strongly felt in sub-Sa-
haran Africa where it is estimated that 25.3 million people are currently
living with AIDS and where 75 percent of the world’s AIDS-associated
deaths occur. Seven African nations have HIV infection rates of over 20
percent. It is estimated that if such an infection rate were to occur in the
United States, health management and insurance systems would collapse.
The problem of sub-Saharan Africa is complicated by the fact that the use
of drugs has resulted in reductions of AIDS mortalities for HIV-infected
people in the United States, but such drugs are rarely available in Africa
because of their high costs. It is expected that AIDS will wipe out decades
of gains in life expectancy in sub-Saharan Africa, with the predominant
affected population being young, mobile, productive, active members of
the workforce (Piot et al. 2001; Haynes 1993). How can science drive the
ethics in the problems associated with AIDS in the world, particularly
nations of Africa so drastically affected by HIV?
 Gayle E. Woloschak 167

Clearly, much scientific effort is being spent on the development of an

AIDS vaccine. Such an accomplishment could once again provide a means
for science to resolve the ethical dilemma facing the world, especially re-
lated to the high incidence of AIDS in Africa and the paucity of approaches
for disease control there (Piot et al. 2001; Haynes 1993). Nevertheless,
many hurdles exist for the development of a vaccine for HIV including the
lack of a strategy to address the genetic diversity found among HIV iso-
lates, the failure to identify HIV molecules that induce long-lasting im-
munity, and the lack of information regarding what is needed to induce
immune protection to HIV in humans or even in animal models (Weiss
2001). While some of this information may come forth as more scientific
research is conducted, some of these problems may require decades for
resolution. Until science leads to the development of a vaccine or cost-
effective treatment options, it is likely that economic considerations rather
than scientific information will drive the ethical concerns about AIDS in
the global community.

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