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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 choose1. The danger to
doctors has led to discussion whether, during epidemics of possibly lethal diseases, medical
personnel are obligated to risk their own lives to help patients.
1
Porter, Dorothy, and Porter, Roy, „The Enforcement of Health: The British Debate“. In: Elizabeth Fee, Daniel M.
Fox (eds.), AIDS. The Burdens of History. Berkeley, Los Angeles, London, University of California Press, 1988: 97.
The AIDS epidemic has raised these questions again2. 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 AIDS not 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 epidemic3.
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 mentioned4.
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
2
On the early history of AIDS, see Grmek, Mirko D., History of AIDS: emergence and origin of a modern
pandemic. Princeton, Princeton University Press, 1989. Shilts, Randy, And the band played on. Politics, people and
the AIDS epidemic. Penguin Books, 1987.
3
Stoddard, Thomas B., and Rieman, Walter, „AIDS and the Rights of the Individual: Toward a More Sophisticated
Understanding of Discrimination“. The Milbank Quarterly. 68(1990), Suppl. 1, 143-174.
4
Mooij, Annet, Out of Otherness: Characters and Narrators in the Dutch Venereal Disease Debates 1850-1990.
The Wellcome Institute Series in the History of Medicine. Amsterdam - Atlanta, GA, Editions Rodopi B.V., 1998:
227: "...it has broken with a time-honoured tradition that associated the risk of contracting a venereal disease with
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 homosexuals5.
In most epidemics of past centuries, specific marginal groups of society were often falsely
blamed for the outbreak and spread of diseases6 (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 Ages8.
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 industries9.
certain elements of society. Although in the early days of the epidemic there was a brief and one-sided concentration
on high-risk groups, this soon changed: the danger of infection is now linked not to persons but to behaviour."
5
Jonsen, Albert R., Cooke, Molly, and Koenig, Barbara A., AIDS and Ethics. Issues in Science and Technology
2(1986): 58.
6
Risse, Guenter B., „Epidemics and History: Ecological Perspectives and Social Responses“. In: Elizabeth Fee,
Daniel M. Fox (eds.), AIDS. The Burdens of History. Berkeley, Los Angeles, London, University of California
Press, 1988, 33-66.
7
By Methodist preachers in England in 1832. Sontag, Susan, AIDS und seine Metaphern. Munich, Hanser Verlag.
1989: 58.
8
Jonsen et al., 1986, 58.
9
Mertz, David, and Schüklenk, Udo, „The Bioethics Tabloids: How professional ethicists have fallen for the myth
of tertiary transmitted heterosexual AIDS“. Health Care Analysis 3(1995), 27-36. Sushinsky, Mary Ann, Mertz,
David, and Schüklenk, Udo, „Women and AIDS: The Ethics of Exaggerated Harm“. Bioethics 10(1996): 93-113.
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 interests10. 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 had already moved doctors
to risk danger in earlier centuries. Today, these incentives consist primarily in the rewards of
generous research funding and of academic recognition11.
10
ibid.
Fox, Daniel M., „The Politics of Physicians' Responsibility in Epidemics: A Note on History“. In: Elizabeth Fee,
Daniel M. Fox (eds.), AIDS. The Burdens of History. Berkeley, Los Angeles, London, University of California
Press, 1988, 86-96.
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 lives12.
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
12
Bayer, Ronald, Levine, Carol, and Wolf, Susan M., „HIV Antibody Screening. An Ethical Framework for
Evaluating Proposed Programs“, JAMA 265 (1986), 1768-1774, underscore the voluntary participation of persons at
risk and the safeguarding of the participants' interests in protection against discrimination.
13
Sontag, 1989, 36-37. Sontag interprets AIDS as a "disease in which people are considered ill before they are ill".
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, starting at 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 partner14.
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
infection15. 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 uninfected16.
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 doubtful17.
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 participate18.
The value of such research is questionable for other reasons, as well. First, the prerequisites for
access required for scientifically valid interpretations of a clinical experiment often remain
unfulfilled. Understandably, AIDS patients who have already taken part in earlier series of
clinical tests sometimes avoid mentioning this participation if not having taken part in earlier
tests is made a condition for inclusion in a new test of a new experimental therapy. Equally
understandable is that AIDS patients with Wastings syndrome who ingest marijuana to stimulate
their appetite may avoid mentioning this fact in order to gain access to a series of tests if a
prerequisite for participation is that the patient does not use marijuana. Are patients who use an
14
Jonsen et al., 1986, 63.
Brennan, Troyen A., „AIDS and the Limits of Confidentiality“. Journal of General Internal Medicine 4(1989),
244.
16
ibid., 242-246.
17
ibid., 244, 245.
18
Schüklenk, Udo, „Ethische Probleme des Designs und der Zugangsvoraussetzungen klinischer AIDSVersuchsreihen“. Ethik in der Medizin 9(1997), 15-30.
15
untruth to gain access to clinical tests acting unethically? It may be argued that the will to live
justifies the lie; can one expect today's patients to fulfill an ethical duty to future patients, whose
chance of receiving effective therapy is reduced by scientifically inaccurate research protocols?
Many HIV infected persons are highly educated and politically active. They see themselves as
members of a highly endangered group, and they establish formal or informal networks to pursue
their subjective interests. In the framework of these networks, they have found ways to consult
chemical laboratories to learn whether the test substances they have received in double-blind
studies are verum or placebo preparations. Those receiving placebos often drop out of the study
or obtain verum medications from the other group19.
The ethical discussion thus centers on the question - often also discussed in the context of clinical
research on other diseases - whether, in view of the specific course of AIDS, it is justifiable to
give patients a placebo without their knowledge. Here, discussion focuses on how much altruism
can be demanded and the validity of the concept, today rejected by many, of paternalistic
obligations to help. Does the designer of an experiment have the right to assign some of his
patients to a placebo group, refusing them a possibly helpful therapy for the sake of possible
greater scientific value and thus abandoning them to certain death?
An ethically acceptable way out of this dilemma lies in an experimental design that does not pit
various groups against each other in a comparison of "all or nothing", but that provides various
therapeutic approaches that give all participants the same chances for successful treatment. The
demand that research should consider the survival interests of all participating AIDS patients20
has already been put into practice. Placebo groups are necessary, because they still offer the
greatest chance of comparison and thus of finding an effective treatment. In earlier times, only
the evaluation of a completed research design could provide information as to whether the tested
substance offered an advantage over the placebo, but now there are viable alternatives.
A double-blind study avoids skewing results by arranging that neither the doctor carrying out the
experiment nor the patients may know who has received a verum and who a placebo preparation.
But now this study is referred to a higher level ethics commission. This commission already
receives all results for evaluation during the course of the research. It ideally recognizes at the
earliest possible moment when the effects of the verum and the placebo differ significantly.
Should this happen, the commission is then required to stop the experiment and to provide all
19
Schüklenk, Udo, and Hogan, Carlton, „Patient Access to Experimental Drugs and AIDS Clinical Trial Designs:
Ethical Issues“. Cambridge Quarterly of Healthcare Ethics 5(1996), 401 f.
participating groups access to the more effective therapeutic procedure. In this way, trust is
created and an unjustifiable disadvantage for the placebo group is avoided.
In the United States, partly due to the HIV crisis, the "Act-Up" movement has developed to
reduce the patronizing and overregulation of citizens. Act-Up has pointed out that limitations of
access to experimental medicines were instituted to protect groups of persons who are
fundamentally healthy or at least have prospects of survival. Denying the HIV infected and AIDS
patients access to experimental therapies provides this "protection" to those who do not benefit
from it, since their prospects of survival (at least to the best of current knowledge) are clearly
limited anyway. Denying an HIV carrier or an AIDS patient treatment with experimental
medications is thus a form of patronizing that has lost any purpose it once may have had.
8 Third World Research and the Problem of Access to Therapy
Particular ethical issues have emerged in the context of experiments with anti-HIV/AIDS
regimens in Third World countries. Concern has been raised that for a number of reasons, study
participants for example in perinatal HIV intervention research may face exploitation of their
situation 21. Hence a consensus statement was issued by participants of a workshop whose task it
was to find a compromise between the needs of scientific research and the ethical requirement to
"avoid exploitation of vulnerable populations". This was no small task given the social and
economic heterogeneity of developing countries and the economic gap between Western
industrialized nations and Third World countries. For example, the cost of the so-called Thai
ZDV regimen, (there is evidence that it is successful in limiting perinatal HIV-1 transmission and
which costs only a fraction of the 076 regimen) is nevertheless five to twenty times more than the
total per capita annual health care expenditure in many developing countries22. Also, many Third
World countries have few structures offering the required prenatal HIV-1 counseling and testing
programs and can hardly afford to expand them. Women may wait for care until late in pregnancy
and deliveries without professional attendance are frequent. Since successful counseling may
involve advice to give up breastfeeding, a major additional problem may be caused in countries
20
Schüklenk, 1997.
Shao Yiming, „Encouraging Medical Ethics in China: Knowledge Acquired and Lessons Learned from the
Hamburg Symposium“. In: Ole Döring (ed.), Chinese Scientists and Responsibility. Ethical Issues of Human
Genetics in Chinese and International Contexts. Hamburg, Mitteilungen des Instituts für Asienkunde Hamburg,
Nr.314, 1999, 37-38.
21
where no adequate substitutes are available23.
It is with this background that the following ethical principles were formulated as guidelines for
perinatal HIV intervention research. "First, the problem under study should be a health priority
established by the public health officials in the host country, and should be relevant to study
participants as well as to the host country. Second, study participants should be assured the
highest standard of care practically attainable in the country in which the trial is being carried out.
Third, the study should not harm the health care resources or infrastructure of the locality. Fourth,
informed consent, (including the knowledge that a decision not to participate in the study will not
prevent access to the highest standards of care practically attainable in the host country), must be
obtained from all study participants. Fifth, studies are only appropriate if there is a reasonable
likelihood that the populations in which they are carried out stand to benefit from successful
results."24 It should be added that one of the workshop participants voiced objections to most of
the wording just quoted; he opined that the text was too vague to ensure an effective protection of
the interests of prospective study participants in Third World countries25.
9 Suicide as an Option for the Terminally Ill
Many AIDS patients who are hospitalized for stationary treatment express the wish to take their
own lives. European culture attributes a fundamental value to every human form of life, even if
unborn or terminally ill and in extreme pain, so doctors and other therapists or caregivers face an
ethical dilemma in counseling their patients. It has meanwhile emerged that, even when therapists
have accepted the possibility of suicide as an alternative to a long and painful wasting away, their
patients seldom actually carry it out. But it appears to console the sick to have the option of
ending their suffering26.
10 Therapy and Cost-Benefit Calculations
In the 1980s, the treatment of AIDS patients already raised further ethical and economic
questions about the cost-benefit relationship of each therapy. More than 50% of all AIDS patients
22
„World Bank Sector Strategy Health, Nutrition, and Population, 1997“, quoted in „Perinatal HIV Intervention
Research in Developing Countries“, published by the Participants of the Workshop, Science, ethics, and the future
of research into material infant transmission of HIV-1. Lancet 353, 1999, 832.
23
Ibid., 833.
24
Ibid.
25
Ibid., 835.
had to be hospitalized for pneumocystis carinii pneumonia. 15% of these died shortly after
hospitalization. Most patients who received an aggressive intensive treatment died anyway. A
few survived several months, others perhaps a whole year. This means that the prospects of such
intensive treatment are not very good, but that they do exist for one patient or another. The
patients are granted the right to decide for themselves whether to undergo treatment. They face a
choice between two very painful options: either to die very soon, or to submit to a treatment that
makes them the witnesses of their own deterioration and long agony27.
Considering that every such treatment is extremely expensive and in the end fruitless, in times of
scarce resources the question is whether it is ethically responsible to employ these enormous
financial means and the necessary personnel here, rather than elsewhere, where long-term success
might be achieved.
Surgery faces the same question. In the treatment of AIDS patients, surgery is indicated, for
example, when abscesses form as a result of immune deficiency or when lymphomas form and
block vessels. Can such interventions responsibly be made with patients whose life expectancies
are generally only a few months? Along with the issue of financial and personnel resources,
should we also consider the risk of infection incurred by the surgeons and other caregivers in
such operations?
Shao Yiming, in his paper contributed to the Proceedings of the First International and
Interdisciplinary Symposium on Aspects of Medicine Ethics in China, has drawn attention to yet
another - rather disturbing - dimension of cost-benefit calculations in view of HIV/AIDS therapy.
If it is indeed mere economic reasoning, i.e., profit expectation, that stimulates "pharmaceutical
companies [to] spend much more money in anti-HIV drug development than in vaccine
development"28, then there is a profound ethical obligation on the side of public health planners
and politicians to support vaccine research by means other than through private pharmaceutical
companies. There are many good reasons why governments should fund universities or
specialized research institutions with highly competent scientific personnel. It is in a situation as
we are confronted with now that one of these good reasons comes to light, namely, to maintain
structures able to develop therapeutic strategies independent of corporate financial interests.
26
Sleek, Scott, „Ethical dilemmas arise treating AIDS patients“. American Psychological Association Monitor. APA
Home Page.
27
Jonsen et al., 1986, 61.
28
Shao, 1999, 40.
11 Self-determination and the Power of Attorney
If a patient decides he no longer wants therapy, some states permit his relatives or friends to sue
the attending doctor for failure to cease assistance. The AIDS disease is often accompanied by
psychological changes robbing the patient of his mental sovereignty; this makes it difficult for a
doctor to decide whether or not he may accede to a patient's wish to discontinue treatment. In
1984, California became the first state to deal with this problem. At this time, it passed the
"Ordinance on permanent power of attorney for health care", which gives a patient still in full
possession of his mental faculties the right to name a friend or relative as his "attorney",
empowered to make the "best" decision for him at a later time29.
Conclusion
To summarize, the so-called AIDS epidemic, like all epidemics in earlier times, is not an
exclusively medical problem. The many ethical/moral and economic questions touched on
indicate that the entire society should be educated on the nature of this disease and that it should
take part in dealing with the social, psychological, and medical problems of those affected.
In the Federal Republic of Germany and other Western countries, some people have rejected
public discussion of the AIDS epidemic because it touches on the taboo area of sexuality; their
objections have meanwhile been almost completely overruled as baseless. For the first time in
history, Western Europe has, after a short phase of initial confusion, responded to an epidemic
with the highest possible degree of understanding for the afflicted and at the same time effective
protection for the unaffected. It has done this with a three pronged approach of medical care,
legal measures, and social work for the risk groups and with the education of the entire
population without reservations or taboos. The best evidence of this is the disappearance of panic
in reporting on AIDS and the recent low figures on new infection.
__________
Acknowledgement
I would like to thank Professor Dr. med. habil. Dr. rer. nat. Hans Wolf of the Institut für
medizinische Mikrobiologie und Hygiene at the University of Regensburg for his critical
attention to an earlier version of this paper.
29
Jonsen et al.
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