Published as: Paul U. Unschuld, „Modern Societies, Medical Ethics and HIV/AIDS“, in: Ole Döring and Renbiao Chen (eds.), Advances in Chinese Medical Ethics. Chinese and International Perspectives, Hamburg (Mitteilungen des Instituts für Asienkunde No.355) 2002: 57-72.
Modern Societies, Medical Ethics and HIV/AIDS
Paul U. Unschuld
1 Introduction
The epidemic spread of HIV infections and the AIDS disease in the last two decades of the 20th century has quite unexpectedly confronted European civilization with a great number of ethical problems. When I speak of European civilization here, I also include non-European countries, in particular the United States, whose system of moral values has been predominantly molded by Europe.
Rich source material documents many epidemics of severe or deadly diseases in the history of Europe; and there is now also a great body of detailed research on the medical and social reactions to such collective threats. Outstanding examples include leprosy in the High and Late Middle Ages; the plague epidemics of the 15th and 16th centuries; the smallpox epidemics in the 18th and 19th centuries; the cholera epidemics of the 19th century; and the polio epidemics of the early 20th century. Each sent a wave of fear through the population and forced government agencies to act. Radical measures of excluding or quarantining newcomers, of the marking or separation of the newly infected, and other restrictions of personal freedom began in early times and have not completely lost their attraction even in the present. They are based on the desire to stop the spread of these deadly diseases and to provide the as yet unaffected with as much protection as possible.
In every case, there has been a trade-off between official efforts to protect the healthy and the individuals' freedom of movement, of association and to live where they choose[1]. The danger to doctors hasled to discussion whether, during epidemics of possibly lethal diseases, medical personnel are obligated to risk their own lives to help patients.
The AIDS epidemic has raised these questions again[2]. But there are also many new ethical problems that were not perceived or that could not arise in earlier centuries, due to lack of knowledge and lack of diagnostic and therapeutic abilities. Today, two decades after the first signs of the possibly epidemic threat AIDSnot only to individual regions but also to the entire population of the world, we can already answer the question as to whether Western society has learned from the past. This involves whether there has been a repetition of past behavior that would have been seen as questionable in the 1960s and 1970s (when no threat was in sight) and whether the concern for the rights of the individual and of groups previously discriminated against (a concern increasing since the 1950s initially in the USA and then in Europe) has led to a more sensitive stance in dealing with victims of the HIV and AIDS epidemic[3].
In Europe and in North America north of the Rio Grande, after initial unrest and occasionally exaggerated reactions, the confrontation with the HIV infection and AIDS has mostly shown a marked improvement over the way epidemics and their victims were dealt with in earlier centuries. The understandable temptation to identify the disease with a specific group of persons has been overcome – this is a substantial difference from the treatment of earlier epidemics. Instead of collectively discriminating against people whose style of life substantially contributes to the spread of the disease, the focus of investigation is on general behavior; increasingly, the actors are not mentioned[4].
There is probably no other disease that touches a comparably broad spectrum of ethical principles. The HIV infection and the AIDS disease provide models for evaluating almost all basic ethical principles that can find application in a medical context. Thus, tracing the history of HIV infections and the AIDS disease from the first reports of a new sickness to its investigation and therapy is like taking a course in medical ethics.
2 Giving a Name and Countering Discrimination
In 1979 and 1980, when a conspicuously large number of homosexuals, especially in the San Francisco area in California, fell ill with rare carcinomas and infections, the syndrome was initially designated by the acronym GRID, or Gay-Related Immune Deficiency. Only a year later, civil liberties activists saw in this term a threat to the hard won freedoms of homosexuals[5].
In most epidemics of past centuries, specific marginal groups of society were often falsely blamed for the outbreak and spread of diseases[6] (for example, the poor were blamed for polio, the Jews for the plague, foreigners for smallpox and the "Asian flu", drinkers of alcohol for cholera)[7]. Such attributions of blame led to discriminatory practices up to and including physical violence. In the 1980s, civil liberties activists demanded that, in addressing the AIDS epidemic, lessons should be learned and the mistakes of the past avoided.
To prevent the renewed discrimination of a social group that many people already mistrusted, in this case homosexuals, the term GRID was replaced by the neutral designation AIDS as early as 1981-1982. Efforts to set up special hospital wards for AIDS patients were initially rejected to avoid paralleling the exclusion of lepers in the Middle Ages[8].
By the mid-1980s, all statistics indicated that in the Western industrial nations, HIV infection afflicted almost exclusively male homosexuals and male and female intravenous drug users - aside from such accidents as the infection of hemophiliacs through contaminated blood supplies. The infection of female partners of infected male drug users and bisexuals was usually the endpoint of heterosexual transmission. But the vision of a danger to the whole of society was conjured up.
Today it is no longer possible to determine whether this was the usual panicky reaction to the first news of a possibly deadly epidemic, or if it was just another attempt - despite all the statistical evidence - to unburden the homosexuals of the stigma of being the primary carriers of the disease. It should be considered, however, that the terrible visions of the destruction of up to a quarter of humankind were of use to quite a few individuals and industries[9].
3 Funding and Group Interests
In 1990 in the USA, calculated in proportion to the number of victims, AIDS research received fifteen times as much funding as cancer research and 58 times as much as heart disease research. This renders plausible some observers' suspicions that the exaggeration and apocalyptic scenarios of the AIDS threat are not free from specific group interests[10]. Nevertheless, the great sum of money that has gone into AIDS research has not trickled away uselessly or been invested in the wrong place. Even if therapy has not yet produced the desired results, the intense worldwide research activity in the past decade and a half has expanded our knowledge of molecular biology and in particular of virology much more than the progress that could have been expected if each scientist had continued working on his own project without the financial and immaterial incentives offered by competition in connection with a specific goal.
If we speak of group interests, we may think of the manufacturers of condoms, whose omnipresent advertising in Germany still keeps alive (against better knowledge) the fiction of a general danger in this country of heterosexual transmission. But at a closer glance, the use of condoms has a highly desirable side effect, even in segments of the population that are not or that are only marginally endangered by HIV. Since the fear of an HIV infection has ended the taboo against condoms, new infections of hepatitis B have sunk dramatically, so that one possible late sequel to hepatitis B, liver cancer, will kill significantly fewer people.
The question of doctors' and nurses' ethical obligation to help those infected with HIV or sick with AIDS arose at the beginning of the AIDS epidemic, as with other epidemics in earlier centuries. In several cases, medical personnel refused to treat such patients, and in a few cases, nurses quit their jobs rather than treat AIDS patients; this has provoked much discussion. In the USA, physicians' associations threatened disadvantages for doctors who shunned their duty; and government agencies offered financial incentives similar to those that hadalready moved doctors to risk danger in earlier centuries. Today, these incentives consist primarily in the rewards of generous research funding and of academic recognition[11].
4 Mass Screenings
The initial panic caused some politicians and many laymen to demand that the afflicted segment of the population be identified, labeled, and possibly even quarantined. This situation created many problems, some of which required legislative action. Thus, in the 1980s, several cases of spontaneous discrimination against people infected with HIV became known. Examples included the firing of employees; parents' demands that their children should not be instructed in school together with infected children; and a landlord's cancellation of a medical practitioner's lease because this doctor also treated AIDS patients. All these cases occurred in the United States and were ruled illegal by the courts.
For various ethical, juridical, and practical reasons, calls to stage mass screenings to identify persons infected with HIV were not carried out. In the mid-1980s, when the ELISA antibody test was introduced to test donated blood for HIV contamination, it appeared possible to examine the entire population in mass screenings.
But the problems of such a procedure were quickly recognized and the voices issuing such calls soon fell silent. First, a mass screening of the entire population can be carried out only at great cost: 100% coverage is impossible. Such a mass screening would have to be repeated regularly every six months, and, due to the mobility of the population, would require many bureaucratic measures of residence surveillance, not to mention the problems raised by foreign visitors and tourists.
Moreover, the ELISA test intended for mass screenings was originally developed to test blood donations, and is thus designed to err on the side of extreme sensitivity. This means that a very high proportion of false positives would be registered among the uninfected population; these people would not learn whether they were indeed infected until after taking a second, more specific test. The temporary uncertainty of being falsely identified as HIV infected can lead to great suffering and desperate reactions. Considering the test's general inconclusiveness, this result cannot responsibly be accepted.
A mass screening was also rejected as unethical, first, because the diseased do not represent a danger to the general public, since the disease is not transmitted by casual contact; and second, because the screening would not lead to any positive consequences. There is no therapy for the infected that can securely prevent the outbreak of the AIDS disease. It is not possible to separate all the infected from the uninfected. Thus, the only consequence that could be expected would be the stigmatization of those groups of persons recognized as HIV infected, with all the disadvantages that this would entail for their personal and occupational lives[12].
In 1989, Susan Sontag drew attention to the fact that a mass screening would create a new phenomenon of medical history, "a new class of lifelong pariahs: those who will be sick in the future"[13]. Her thought must be seen as a well-meant contribution to the prevention of unjustified discrimination, but it reflects a too narrow understanding of disease as personally perceived suffering. A person infected with HIV is a carrier of the disease, even if he does not yet suffer from it himself. In a broader sense, the infected person is already sick and can pass this disease on.
The senselessness of mass screenings is not that they identify persons who do not yet feel ill; medicine already knows plenty of such situations. The absurdity of mass screenings becomes clear when the factors of the aforementioned expense and the impossibility of total coverage throughout society are weighed against the limited use that can be expected to result from the test, namely that a few virus carriers thus discovered might change their style of living to avoid infecting other persons. Only in a few states of the USA have prison inmates been subjected to mandatory screening for HIV infection; those found to be infected were put in separate cell blocks.
5 Individual Screenings
In contrast to mass screenings, it does make sense to determine the HIV status of individual patients in certain clinical situations; for example when there is the danger that medical personnel have been infected. We now have medications that prevent further consequences 90% of the time, if taken within fifteen minutes of a new infection - a percentage that falls rapidly in the next few hours. Thus, today we have the option of carrying out an HIV test on a suspected patient while at the same time beginning prophylactic therapy with the attending personnel; the therapy can be discontinued if the initial suspicion turns out to be unfounded.
Screening organ, blood, and semen donors pose no ethical problems, since these services are voluntary. Those who do not wish to be tested for HIV infection can avoid the test by not donating organs, blood, or semen.
There have been discussions whether a license to marry could be made dependent upon both partners' willingness to take an HIV test. Here, too, usefulness and possible damage have been weighed against each other, and no Western country carries out such mandatory screenings. The freedom to marry whomever one wishes is a fundamental part of Western civilization. The statistical probability of a person entering marriage with an HIV infection is very low and does not justify the bureaucratic and financial effort of carrying out mass screenings on all marrying couples.
There is another aspect. It is surely a legitimate task of the state to promote the education of the population; but more and more people say it is not the task of the state to regulate all areas of life. In the Western world, marriages are conducted between adults, and thus between citizens legally responsible for their own actions. Germany's architectural regulations require railings of a legally specified minimum height on every balcony and every slope; and people have also grown accustomed to having a state ban on every danger that could result from wrong behavior. But in the era of the rediscovery of individual responsibility, it clearly makes more sense for responsible citizens to base their avoidance of specific behaviors on their own knowledge of the personal dangers entailed, rather than on legal prohibitions.
6 Confidentiality versus Information
Even without mass screenings, diagnoses of HIV infection are constantly made. These, too, entail a number of ethical problems. There is no question as to whether the infected should be informed of their status - at least if they are adults. But what about HIV infected children? Is there an ethical imperative to inform children of their condition, and if so, startingat what age?
A difficult problem arises from the traditional confidentiality of the doctor-patient relationship; the Hippocratic Oath requires a doctor to swear not to inform third parties about anything he learns about a diseased person in this context. In the case of an HIV infection, the advantages of a relationship of trust between the affected person and "his" doctor must be weighed against the possibility of violating the rights of third parties. The therapist's ability to influence a patient, which depends on a relationship of trust, is confronted with the issue of the danger to the infected person's life companion or sexual partner[14].
In the early 1980s, California passed ordinances that threatened penalties of up to one year in prison or fines of up to $10,000.00 for anyone passing on to third parties information about someone's HIV infection; and similar ordinances were also passed in other centers of HIV infection[15]. But court decisions have meanwhile moved away from this absolute protection of doctor-patient confidentiality and now, under certain conditions, call for the release of data to protect the uninfected[16].
The epidemiological method of contact tracing, initially considered prudent, is an issue of confidentiality. At a time when it was still not at all clear who infected whom under what circumstances, efforts to trace the path of infection seemed prudent. It was debated whether infected persons who refused to reveal their sexual partners should be forced to do so under the threat of penalties. Civil liberties movements spoke out against mandatory contact tracing and pointed out not only that knowledge thus gained about individuals might be abused, but also that the scientific value of such procedures was doubtful[17].
7 Research Designs and the Freedom to Participate
Research on the AIDS disease and possible therapies has also led to numerous ethical problems. The basis of therapy research is normally a double-blind study with a verum group and a placebo group. The ethical prerequisite of any study involving human beings is voluntary participation. In the case of AIDS, this willingness is often lacking. Generally, AIDS medications still in the testing stage may not be prescribed. Thus, the only way AIDS patients can gain access to such medicines is to take part in double-blind studies. This means that, in this context, it is not possible to obtain a truly voluntary decision to participate[18].