[3.6.] Rawls and Distributive Justice

 

The worldwide AIDS epidemic raises the issue of distributive justice:

 

distributive justice (df.): justice in the distribution of social goods, such as income, education, and health care.[1]

 

The question is: how can we distribute scarce and expensive medical resources in the most just way?

 

The most influential theory of distributive justice in the modern era was developed by the American philosopher John Rawls (1921-2002), in his 1970 book A Theory of Justice.

 

Rawls sets out to answer the question, what would a perfectly just society be like?

 

To answer this question, he conducts a thought-experiment, imagining people in a situation he calls the Original Position, a hypothetical situation before a society begins and in which the people who will live in that society must decide what rules they will live by.

 

People in the Original Position...

1.      are behind a Veil of Ignorance: They have no knowledge about their particular personalities and positions in society. None of them know anything about themselves (sex, race, intelligence, talents, income, etc.). They still have knowledge of humans in general and of these general differences; they just don’t know which particular classes they belong to.

2.      are rational, in that they use the most effective means to reach their goals.

3.      are mutually disinterested, in that none of them takes any interest in the well-being of other people.

4.      have an equal say in the principles they will choose to live by (they “all have the same rights in the procedure for choosing principles; each can make proposals, submit reasons for their acceptance, and so on.”)[2]

 

According to Rawls, the principles of justice are whatever principles people in the Original Position would choose to live by. Rawls’s idea is that if you don’t have knowledge about what your own particular personal characteristics are, then you cannot set up institutions to protect the interests of those who have those characteristics.

 

According to Rawls, people in the Original Position would choose the following principles:

 

The First Principle of Justice. Each person should have the maximum amount of liberty compatible with the same amount of liberty for everyone else. The idea behind this principle is that liberty is the top priority among all goods. If you do not have freedom to pursue your conception of the good life, then no other good things matter very much.[3]

 

The Second Principle of Justice. Inequalities in the distribution of goods (wealth, authority, health care, etc.) are justified only if

(a)    they work to the advantage of the worst-off persons in society [this clause is known as the Difference Principle]; and

(b)   the positions that bring with them greater goods and authority are open to all persons [this clause is known as the Equal Opportunity Principle]

 

The Difference Principle has important implications for the distribution of wealth and medical care:

 

By “greatest benefit to the least advantaged,” Rawls means that the inequality makes those who are worst off better off than they would be were there no such inequality. If a specific inequality in the distribution of some social good makes the worst off better off than they would be otherwise, then it is a justified inequality.

 

For example, the existence of well-paid physicians and medical researchers improves the conditions of everybody, including those who are worst off: the sick and the poor. If doctors were not well-paid, then the most capable people would not be motivated to become doctors and researchers, and the quality of health care available to the sick and the poor would decrease. Since having well-paid doctors and researchers makes the worst-off people in society better-off, it is morally permissible that doctors and researchers make more money than other people.

 

But an unequal distribution of medical care is not justified according to this principle. A world in which relatively wealthy, educated people in developed countries have access to medical care and relatively poor, uneducated people in developing countries do not does not improve the lot of those who are worst off... in fact, that inequality seems to contribute to them being worse off.

 

This is exactly the case with the current distribution of medical care with regard to HIV and AIDS. The majority of people in affluent countries in the developing world have access to life-saving drugs that help prevent the spread of HIV and that treat AIDS. But the majority of poor, uneducated people in the developing world have no such access. So Rawls’s theory provides an account of why this specific inequality is unjust: people in the Original Position, behind the Veil of Ignorance, would not approve of this inequality, because none of them would not know (before the Veil is lifted) whether he or she would have access to HIV/AIDS drugs.

 

 

[3.7.] Placebo-Controlled Studies.

 

Ask them to describe these studies: what they were trying to discover, and why they were controversial.

 

In the mid-1990s, a controversy erupted regarding studies of drugs designed to prevent transmission of HIV from pregnant women to their fetuses (so-called vertical transmission).

 

Several studies conducted in the developing world (including Cote d’Ivoire, Uganda, Tanzania, South Africa, Malawi, Thailand, Ethiopia, Burkina Faso, Zimbabwe, Kenya, and the Dominican Republic[4]) attempted to answer the question, what is the minimum dosage of the transmission-prevention drug that will work to prevent the fetus from inheriting the virus? If the minimum dosage were know, then in the future doctors could use the same amount of the drug to treat more patients, thus preventing even more cases of transmission.

 

These studies, which were funded by the U.S. government and other governments, gave placebos to one group of HIV+ pregnant women and the relevant transmission-prevention drug to another group of such women.

 

But at this time, researchers had already identified drugs which were effective in stopping the transmission of HIV to fetuses. So the women in the placebo-group were, in effect, denied drugs that could have stopped the transmission, and their children were allowed to be born with HIV when researchers could have prevented it.

 

Marcia Angell, who at the time was the executive editor of the New England Journal of Medicine, criticized these studies as being immoral:

 

An essential ethical condition for a randomized clinical trial comparing two treatments for a disease is that there be no good reason for thinking one is better than the other. Usually, investigators hope and even expect that the new treatment will be better, but there should not be solid evidence one way or the other. If there is, not only would the trial be scientifically redundant, but the investigators would be guilty of knowingly giving inferior treatment to some participants in the trial. The necessity for investigators to be in this state of equipoise applies to placebo-controlled trials, as well. Only when there is no known effective treatment is it ethical to compare a potential new treatment with a placebo. When effective treatment exists, a placebo may not be used. Instead, subjects in the control group of the study must receive the best known treatment. Investigators are responsible for all subjects enrolled in a trial, not just some of them, and the goals of the research are always secondary to the well-being of the participants. [5]

 

 

[3.7.1.] Ethical Responses to the Placeo-Controlled Study.

 

The Utilitarian position:

·         This sort of study is the most efficient way to identify the minimum quantity of drugs necessary to prevent vertical transmission of HIV (from mother to child). So by engaging in this sort of study we will be able to save more lives in the long run.

·         The women who received placebos, as well as their children, are no worse off than they would have been without the study. So no negative consequences factor into a utilitarian analysis.

 

The Kantian position:

·         It is immoral to give one group in the study a placebo when a known drug is available, because it uses each of those placebo-receiving subjects as means to an end and thus violates the second formulation of the Categorical Imperative.

·         Ethical principles are not simply without exception... they are universal. Were such a study conducted in the US, it would have been condemned by American bioethicists as immoral. To assume that it is morally permissible to conduct such a study on poor African women is to apply different moral standards to different populations, and thus to behave immorally.

 

 

[3.7.2.] The Tuskegee Syphilis Study.[6]

 

Marcia Angell compared the placeo-controlled studies of AZT in Africa to the infamous Tuskegee Syphilis study.

 

·         In 1930, the United States Public Health Service began a program to treat syphilis in Macon Co., Alabama (a county that was 82% African-American, and the location of the town of Tuskegee). At the time there was a 36% incidence of syphilis in Macon Co. The program was funded by a philanthropic organization which soon ran out of cash, so the program was ended. But by that time, the USPHS had identified many African-American men with syphilis.

·         The USPHS saw this as an opportunity to conduct a study of the natural course of syphilis—to watch without interference as the disease progressed. They identified 399 males, all of whom were in a late, noninfectious stage of the disease, to observe. None of them had received any sort of treatment in the short-lived treatment program.

·         The study was poorly organized and documented. Only one nurse was in Tuskegee constantly; the USPHS doctors visited to collect data only rarely—sometimes years would pass between their visits.

·         Data collection frequently involved spinal taps, which were not only painful but also dangerous, as they risked infecting the subjects. Researchers persuaded subjects to undergo spinal taps by telling them they suffered from “bad blood” and that the spinal taps were treatments for their condition. They described the procedure as “SPECIAL FREE TREATMENT,” even though it was wholly diagnostic and not at all therapeutic.

·         As “payment” for participation in the study, the men were given free transportation and hot lunches. When they died, they were given burial in exchange for the right to perform autopsies to examine the spread of the disease.

·         In 1943, penicillin was discovered and became widely available a few years later.

·         The Tuskegee study continued into the 1970s, and none of the subjects were ever given penicillin.

·         The study was never a secret within the medical profession; at least 17 articles on the study were published in medical journals between 1936 and 1972.

·         In 1969 a group of researchers and physicians (including the director of the Centers for Disease Control and Alabama’s state health official) met to discuss whether to end the study. They voted against ending it.

·         Also in 1969, the Macon County Medical Society (a group of physicians, predominately African-American) was informed of the study and did not object to it—its members were given a list of the study’s subjects and they agreed not to give them antibiotics for any other ailments. [So this study involved not only racism but also classism and elitism.]

·         In 1972, Peter Buxton, a USPHS employee, mentioned the study to a friend, a reporter for the Associated Press. That reporter wrote and published a story about it. Syphilitic subjects soon began taking penicillin. The subjects sued the government in federal court, and the government settled, awarding living syphilitic subjects $37,500 each and heirs of deceased syphilitic subjects $15,000 each. In addition, the federal government agreed to provide free health care for subjects and their wives and children (by 1988, this had cost the government $7.5 million).

·         It is believed that 28 of the original study members died from syphilis during the study.

 

Pence lists some similarities between Tuskegee and the placebo-controlled study: in both, the participants were black, poor, illiterate, victims of STDs, and “subjects of a grand experiment run by a huge, distant government” (101).

 

But there are differences, as well

·         in Tuskegee, no valuable information was gleaned;

·         the men in the Tuskegee study did not consent to participating in research (they did not even know that they were being used in that way);

·         the Tuskegee subjects were in fact harmed by the study: they were caused pain by the spinal taps, and since local doctors agreed not to give them antibiotics for any reason, they had to suffer the symptoms of other illnesses.

 

 

Stopping point for Monday January 26. For next time, begin reading Pence ch.5 (pp.109-14).