HIV/AIDS

The human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) has reached pandemic proportions and has presented a multiple-dimension challenge for science, technology, and ethics. In 2004 approximately 39.4 million people worldwide were infected with HIV/AIDS, among whom about 3.1 million died in that year, including about 510,000 children under age fifteen. The Joint United Nations Programme on HIV/AIDS/World Health Organization (UNAIDS/WHO) estimates that in that year 4.9 million new infections occurred. Impacts have been more severe in southern Africa, where about one-third of the deaths occurred in 2004 and where life expectancies have dropped by more than 20 years in some countries. HIV/AIDS increasingly affects women and children; nearly half of those infected worldwide are female, with even higher infection rates for women in Africa. Infected pregnant and nursing women can pass the disease to their babies.

Between 2001 and 2004 global funding for HIV/AIDS relief tripled to $6.1 billion, with resultant improvements in treatments and services; this figure includes estimates of funding from all sources, ranging from individuals and families to national and international efforts. Like infections, however, services are unevenly distributed, with the poor and stigmatized remaining underserved. Analyzing the ethics and politics of scientific, technological, and other responses is a contentious issue.

Historical Perspectives

It is useful to compare the HIV/AIDS pandemic with the Spanish influenza epidemic of 1917–1918, which also was promoted by the global transportation network at an earlier stage of its evolution. In a little less than two years the Spanish flu is estimated to have killed from 21 to 50 million persons worldwide in a population of approximately 1.8 billion. While HIV/AIDS has not yet killed as large a percentage of the world's population as the Spanish influenza epidemic, HIV/AIDS infections are not self-limiting and infection rates are expected to remain high unless effective prevention programs are developed and implemented.

Mirko Grmek (1990) provides an extensive history of the emergence and identification of HIV/AIDS. In the late 1970s the disease began to appear in the United States and Europe as physicians noticed unusual symptoms in members of homosexual communities in California and New York. Those patients presented with a variety of symptoms, such as pneumonia, mononucleosis, thrush, and Kaposi's sarcoma. Some were relative benign conditions, yet the patients went into a rapid decline, and their immune systems appeared to be compromised. The U.S. Centers for Disease Control announced the disease on June 5, 1981, but the disease was not named acquired immunodeficiency syndrome until the summer of 1982. Most of the early cases involved homosexuals, but other cases developed in intravenous drug users and then in heterosexual males, women, and patients with no history of drug use. The disease eventually was recognized in equatorial Africa, where cases might have appeared as early as 1962.

Scientists eventually identified "Patient Zero," a flight attendant who apparently was responsible for infecting a large number of the early patients in the United States. Spread of the disease thus took advantage of a global transportation network, establishing a pattern that was repeated on a much less dramatic scale with the severe acute respiratory syndrome (SARS) in 2002–2003 and poses an ongoing challenge to world health management. Patient Zero continued to engage in unprotected sexual activity long after being diagnosed, posing questions about responsibility to both patients and the medical community.

Science, Technology, and Responsibility

Since the early 1980s scientific research on HIV/AIDS has been involved in a series of controversies. For instance, immediately after the identification of AIDS researchers began to try to identify the cause. Priority in the 1983 identification of HIV as the infectious agent was claimed by both Robert Gallo at the National Cancer Institute in the United States and Luc Montagnier at the Institut Pasteur in France in what became a widely reported case of questionable scientific conduct. Even after the discovery of HIV a prominent researcher, Peter Duisberg, rejected it as the basic cause of AIDS and was accused of scientific irresponsibility.

HIV/AIDS research has divided scientists and has caused conflicts between scientists and the public about research strategies and priorities. Should the emphasis be on basic immunological science or on clinical treatments? Should treatment research be aimed at preventing human cell infection by HIV or attacking human cells that already are infected? More generally, what are the relative costs and benefits of spending money on HIV/AIDS research instead of on research into another disease, such as malaria or diarrhea? An estimated 300 million people are infected with malaria, among whom 1 to 1.5 million die annually. A fraction of the money spent on HIV/AIDS research and treatment would have a much greater impact on malaria, and the provision of safe supplies of public drinking water would cause a significant reduction in the over 1 million deaths each year from diarrhea.

Research, particularly drug testing, triggers further ethical questions. How much testing should be conducted before a potentially lifesaving drug is made available to the public? What rules apply when scientists conduct research in developing countries: the rules of the corporate home nation or the rules in the country where research is conducted? Are some policies, such as informed consent, so basic that they should apply anywhere in the world? Does consent always attach to the individual, or does it extend in some cases to communities with high infection rates? Should subjects and their communities participate in research design? How can information about research be explained effectively to people who are not familiar with scientific research and its implications? Can effective treatment be withheld for the purpose of advancing scientific understanding and the possibility of developing new drugs? How can participants be protected from or compensated for negative unintended consequences of research trials? What obligations do researchers have to provide short- and long-term health care to research subjects and their communities? How should societal needs for research be balanced against the rights of the individual? Vaccine research poses special problems because the subjects subsequently may test positive for HIV/AIDS.

Debate also continues over the relative merits of treatment and prevention. Is it better to ease suffering and prolong the lives of those already infected or to prevent new cases from occurring? Prevention will help only those who are not currently living with HIV/AIDS, whereas treatment is needed for the millions already infected to prolong lives, maintain family incomes, and promote general economic stability. Moreover, infected patients need relief from suffering

in addition to treatment to slow the progress of the disease. Should scarce human and financial resources be diverted from prevention and treatment to provide palliative care?

Additionally, some people see HIV/AIDS primarily as a behavioral problem; if the behavior changes, the problem will disappear. Controlling HIV/AIDS is about more than developing drugs and vaccines; social science also plays an important role. New drugs will not reach patients unless medical services and drug delivery systems in poor countries are improved. The public must be educated about both causes and treatment. Researchers should investigate reasons for stigma and develop strategies to reduce discrimination and protect the most vulnerable. Within the prevention camp some advocate abstinence as the only moral alternative, whereas others recognize the reality of sexual activity and believe it is more ethical to promote condom use to reduce infection. In such a complex scientific and technology context what is the proper mix of prevention, treatment, and care?

Social Responsibilities

The infectious nature of HIV/AIDS also raises questions about societal responsibilities to potential victims. Should doctors or health institutions inform others when a patient is diagnosed with HIV/AIDS? How should the need to prevent the spread of a deadly disease be balanced against a patient's right to privacy? Women may be particularly at risk from identification because their subordinate status in many places may subject them to social isolation or deprivation of home or property.

Society often discriminates against people infected with HIV/AIDS. Discrimination may be driven by fear of infection, and education should be provided so that people know that the disease is not spread through casual contact. The general stigma attached to homosexuals, drug users, and the poor also drives discrimination. UNAIDS attributes the lack of political will to deal with the pandemic in part to the high infection rates among "marginalized and stigmatized population groups such as women who sell sex, drug injectors and men who have sex with men."

HIV/AIDS exacerbates gender inequities. Women often lack both information about the disease and the power to refuse sex or demand that their sexual partners use condoms. Identification of affected women puts them at higher risk of stigmatization, expulsion from their families, and deprivation of property and employment. Poor women who lose their spouses to the disease may be unable to support their families. More than 2 million children are infected with HIV/AIDS. Millions of others live with infected family members or have been orphaned by the pandemic.

Earlier in the epidemic the high incidence of HIV/AIDS among American gay males juxtaposed prejudice against homosexuals with the increasing political influence of affluent gay men. The gay community effectively concentrated attention on the emerging disease; that resulted in the allocation of research dollars to develop new treatments. HIV/AIDS is now relatively controllable for those who can afford expensive antiretroviral treatments, but the epidemic continues to spiral out of control because millions of infected poor people cannot afford treatment. The needed antiretrovirals are too expensive for most HIV/AIDS patients, and 90 percent of those who need drugs cannot afford them; most of those patients live in sub-Saharan Africa.

Some countries, such as Brazil, have made antiretroviral drugs available for free or at low cost to poor people who need them. Such programs help current patients but may reduce incentives for future pharmaceutical research. Drug companies engage in research and development to make money; if developing countries can obtain drugs without paying market prices, profits will fall and pharmaceutical companies may be less likely to do research into diseases that occur primarily among the poor. Nevertheless, the World Trade Organization Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS Agreement) allows an exception to intellectual property rights in special cases such as emergencies, and that provision has been used to give developing countries access to HIV/AIDS drugs.

Michael Specter maintains that treatment is not enough; only a vaccine can stem the pandemic, yet drug companies lack sufficient incentives to develop a vaccine. This constitutes a case of market failure requiring government intervention.

Pharmaceutical companies in affluent industrialized countries conduct most research on new drugs and vaccines. Do they have a corporate responsibility to spend money on public health problems that may not produce profits? Do their countries have a responsibility to protect the less developed world by providing direct assistance or incentives for drug research? The developed world may have a direct stake in stopping the pandemic to reduce economic and political destabilization in many poor countries.

HIV/AIDS constitutes a global health crisis, but those in greatest need of assistance live in the poorest countries or are among the poorest and most stigmatized members of more affluent societies and lack strong political support. The crisis affects more than individuals; families are disrupted, and societies destabilized: "AIDS is accomplishing a sweeping undoing of past human development advances, especially in southern Africa". The HIV/AIDS pandemic requires strategies to address problems from the individual level to the international level.

MARILYN AVERILL

SEE ALSO African Perspectives: HIV/AIDS;Drugs;Emergent Infectious Diseases;Health and Disease;Medical Ethics.

BIBLIOGRAPHY

Attaran, Amir, and Jeffrey Sachs. (2001). "Defining and Refining International Donor Support for Combating the AIDS Pandemic." Lancet 357: 57.

Feenberg, Andrew. (1995). Alternative Modernity: The Technical Turn in Philosophy and Social Theory. Berkeley: University of California Press.

Grmek, Mirko D. (1990). History of AIDS: Emergence and Origin of a Modern Pandemic. Princeton, NJ: Princeton University Press. This book presents a detailed history of the HIV/AIDS pandemic and attempts to identify the emerging disease and considers both biological and social factors contributing to the pandemic.

The Global Aids Policy Coalition. (1992). AIDS in the World: A Global Report. Mann, Jonathan M., general editor; Tarantola, Daniel J. M., scientific editor; Netter, Thomas W., managing editor. Cambridge, MA: Harvard University Press, 1992). This comprehensive book provides detailed chapters on "The Impact of the Epidemic," "The Global Response," "Global Vulnerability," and "Critical Issues."

Marais, Hein, et al. (2004). AIDS Epidemic Update: 2004. Geneva: UNAIDS. The UNAIDS/WHO web site provides one of the most comprehensive sources for current information about HIV/AIDS and international responses to the pandemic.

Specter, Michael. (2003). "The Vaccine: Has the Race to Save Africa from AIDS Put Western Science at Odds with Western Ethics?" New Yorker, February 3.

INTERNET RESOURCE

Wolf, Leslie E., and Bernard Lo. (2001). "Ethical Dimensions of HIV/AIDS." HIV Insite. Available from http://hivinsite.ucsf.edu/InSite?page=kb-08-01-05.