Decisions in Circumstances of Poverty
- Eliane S. Azevedo, M.D., PhD.
Department of Biological Sciences,
Nucleus of Bioethics,
State University of Feira de Santana, Bahia, Brazil
- Eneida de Moraes Marcelio Cerqueira, M.D,
Department of Biological Sciences, Nucleus of Bioethics,
State University of Feira de Santana, Bahia, Brazil.
Eubios Journal of Asian and International Bioethics 12 (2002), 105-107.
The poor, either children, adults or elderly, regardless of any others human attributes, are condemned to conspicuous vulnerability. The World Bank Group (1) considers a person as poor " If his or her consumption or income level falls below some minimum level necessary to meet basic needs". Presently, the World Development Report 2000/2001 refers to the poor people on its multiple dimensions as " ...live without fundamental freedoms of action and choice... lack adequate food and shelter, education and health... extreme vulnerability to ill health, economic dislocation, and natural disaster... often exposed to ill treatment by institutions of the state and society... powerless to influence key decisions affecting their lives (2).
Estimations of poverty from the income index by World Bank data show that in 1998 1.2 billion people live with less than one dollar a day. In developing countries these figures include 24% of the population and 2.8 billion live on less than two dollars a day (2). In Brazil, the more recent official demographic data showed that 28 millions Brazilian live in extreme poverty.
Thus, from the magnitude of the poverty numbers, plus its multiple dimensions of health necessities, there is a greater probability of poor persons be over-included in research on clinical trials. Thus, the incommensurable challenge for the researchers and for members of Ethical Boards is the moral responsibility to effectively protect the dignity and the rights of poor persons as subjects of research (3, 4).
The autonomy of the poor
As shown, a little over one third of humanity lives on less than two dollars a day. If to act autonomously is to act freely in accordance with self-choice, the main question is to evaluate how much freedom two dollars a day allow an "autonomous" way of surviving? If there are no basic conditions to administer one"s hungry; there is no self-choice for any other decision.
For most of the poor families seen by one of us (ESA) during twenty-five years work in the Medical Genetics Ambulatory in a public University Hospital in Northeastern Brazil, there should be no reasonable meaning to worry about the genetic risks of a probable future child when the greatest concern was to feed those children already born. The worry on having what to eat in the next meal is the most fundamental problem of a poor people"s life. Anything that facilitates to supply basic necessities has absolute priority, regardless of other possible preferences. Self-preference, autonomy for choice, freedom for decision and so on, are entirely replaced by the fundamental struggle for keeping surviving. Thus, any offer able to supply some life-basic necessities has a psychological impact greater than the theoretical freedom for choice. The choice is already predetermined by the poverty circumstances. In another words: there is no free choice in poverty. We shall call this situation "poverty-circumstances -decision".
Thus, in a situation of poverty-circumstances-decisions, the principle of respect for autonomy becomes a kind of self-illusion practice, for physicians and researchers. The application of the term of consent to that known to have no obvious chance of choice goes deeply into the physicians and researchers morality. Consequently, those pressed by poverty-circumstance-decision pose additional complexities to the principle of respect for autonomy. Researchers and physicians must have clear understanding and full respect for subjects in poverty-circumstance-decision before considering obtaining their consents. For those who income barely assures food intake, the care for health is a heavy load. It begins with the perception of being sick. The health threshold and the concept of disease differ between poor people and rich people. Common cold, cough and fever, as well as rheumatic pains are usually not taken as disease by the poor (5) (unpublished data). When the complains (signs and symptoms), reaches the cultural perception of disease, the decision to seek medical care faces others barriers such as having enough money for transportation (bus), to the doctor office, and for buying the prescribed medicines. If, after facing all that, the patient succeeds in seeing a doctor, the offer of an opportunity for having free medicines sounds like a miracle.
When a poor patient is consulted if he or she consents in participating as subject of a research project, under such and such conditions of risks and benefits, plus the fact, of getting free medicines, free follow up care and free laboratories tests, up to the end of the study, the patient"s feelings are of an unquestionably fascinating offer. The patient is also informed that he or she is entirely free to accept or not, being included in the research protocol. This is a patient"s autonomous decision, says the doctor. However, the free care, free tests and free medicines will be available only if the patient agrees in participating in the clinical trial, adds the doctor. The doctors also require that the patient (usually badly literate or illiterate) gives a formal consent by signing a paper after reading, or listening, what is written on it. Obviously that the rational perception of the poor patient is already dragged by the perspective of free medicines and the free medical care. Even knowing that this help is offered only for a limited time, a few months, for example, this type of detail becomes irrelevant. Poverty does not worry about future things. What really matter is solving today"s problem. Vital necessities can not wait. In that context, the principles of beneficence acquire an expanded meaning. Is there real beneficence in giving time-limited free medicines?
Decisions in the circumstance of poverty
We shall fundament this discussion on a Spanish essayist and philosopher named Jose Ortega y Gasset (1883-1955) (6). The fundamental essence of Ortega y Gasset"s idea regarding individual life was that it is a finite vital project to be lived under given circumstances. The living circumstances in Ortega y Gasset are the basic reality. " I am not my life. This, which is reality, is made up of me and of things. Things are not I and I am a not thing: we are mutually transcendent, but both are immanent in that absolute coexistence which is life" Thus, life for Ortega y Gasset is an intense dialogue between oneself and one circumstances. In his most known book The Revolt of the Masses (6), Ortega y Gasset shows that life is made up of two fundamental elements: circumstances and decisions. We are deciding all the time. Even, when in despair, if we decide not to interfere and let to be what will be, we are deciding not to decide. Not only that, but the circumstances are always impelling us to make decisions (p.66). The circumstances are new conflicts we have to decide on, says Ortega y Gasset (6; p 66).
For those living in poverty, the circumstances in which the decisions are taken allows no possible chance for one"s autonomy because of alternatives restrictions. Most of the time there are no alternative at all, unless the alternative of leaving this world is to be also considered (6; p 61).
Facing the extreme of patient"s autonomy restriction, such as poverty, the principles of beneficence, non-maleficence and justice acquires unique dimensions for physicians and researchers. If, on one hand, physicians and researchers are well conscious of the patient"s circumstances of poverty, the new challenge is to have the capacity for perceiving what beneficence, non-maleficence and justice are in a cultural world of poverty. Poverty has its own cultural values, its own perception of beneficence, non-maleficence and justice, which may differ from those of the medical doctors and researchers. In every culture, says Pellegrino, (1976) (7), "medicine rests on a substructure of concepts which determine its character; that is to say, its methods and practice as well as its ethos, ethics, and ideology". Within the diversity of human cultures, poverty adds its own reality. In Brazil, for example, the medicine available for the poor people has, not only methods and practice different from that of rich people"s one, but also has its own ideology.
Traditionally, the concept of beneficence was restricted to what the physician would think will be better for the patients, with no concern for what the patients would think to be better for themselves (8). In the same way, one may question about the concept of non-maleficence and justice in the physician/researcher minds. Are they equally satisfying under the patient"s view?
Let us assume that a medical doctor, full of the best intentions, find himself in front of a obviously poor patient in desperate need of medical care. By having the possibility of offering free medicines and free care to one so desperately in need of it, gives to the researcher/doctor an enormous power. Thus, in poverty circumstance decisions, the social distance between the research/doctor and the patients goes beyond that of greater scientific knowledge. The research/doctor has absolute political and scientific power over the situation. The treatment chance is entirely on his hands. However, by having personal interest in the trial, the research-doctor/patient relation became very delicate in its morality. Is it morally acceptable to have such an unequal contract? Is it either legal or morally acceptable to rely on informed consent under such circumstances? Is there any sense of justice? The obvious conclusion is that the informed consent, in such circumstances, is not attending the bioethics principles of autonomy and justice, and is hardly attending the principles of beneficence and non-maleficence.
Ethics, ethnic diversity and poverty
Finally, some additional thoughts on the ethical aspects of carrying out clinical trial in developing countries as a matter of great concern for many scholars (9), as well as for the United States Government (4). For most developing countries, in addition to the poverty of great part of its society, there are the problems of different ethnicity between the richer and poorest ones. The ethical aspects of clinical trials in different ethnicity (not White), deserves world-wide worries. As Jonsen (2000) points, "...the revelation of the Tuskegee experiment, which linked to medical progress with racial discrimination, shocked the nation". This study, conducted by the Unites State Public Health Service in the State of Alabama, USA, for forty years, induced " about 600 Black men, mostly poor and uneducated" (10), to participate in a syphilis follow up study with the objective to "determine from autopsies what the disease does to human body. The men had been promised free transportation to and from the hospitals, free hot lunches, free medical care for any disease other than syphilis and free burial after the autopsies were performed" (10). When the scandal came out in the USA press in 1972, it became also clear that 400 out 600 men had syphilis but were never informed or treated in spite of the availability of effective treatment. Not only that injury, but the 200 controls, without syphilis, plus those with syphilis, were, all of them, informed to have bad blood, requiring periodic medical examinations (10). All of them were Black men.
In the Western World, Black ancestries are also linked to lower social conditions and lower income. In Brazil, Black ancestries and poverty are historically linked as a shamed inheritance of slavery. The poorest Brazilian is always the darkest ones as we had showed in a sample of 1,850 adults and 6,431 school children from Northeastern Brazil (11). Thus, poverty and Black ancestry impose special attention for Ethics Research Committees to achieving an effective protection of person"s rights and dignity, free of cultural prejudices and researcher"s personal interests.
- Poverty Net. The World Bank Group. Understanding and responding to Poverty. http://www.worldbank.org/poverty/mission/up2.htm Date: August 31st, 2001.
- -Poverty Net. The World Bank Group. World Development Report 200/2001. http://www.worldbank.org/poverty/wdrpoverty/report/index.htm Date: August 31st, 2001.
M. Angell. "Investigations" Responsibility for Human Subjects in Developing Countries. NEJM 342 (2000); 967-69. See also, by the same Author, " Ethical Complexities of Conducting Research in Developing Countries" NEJM 337 (1998): 1003-05; "The Ethics of Clinical Research in the Third World" NEJM 337 (1997): 847-49. The Author main points are that many studies done in the Third World could not be done in the countries sponsoring the work. Clinical trials became a big business not very far from the Tuskegee (See about the Tuskegee study later in this paper).
- National Bioethics Advisory Commission. Presidential Bioethics Commission Issues Report on Clinical Trials Research in Developing Countries. Bethesda, MD. April 30, 2001 www.bioethics.gov
- Unpublished data collected by Dr. Cristina M. M. Fortuna and one of us (ESA), interviewing patients from the lowest social income classes seeking attendance at public medical services provided by the City of Salvador.
- Ortega Y Gasset. A Rebelieo das Massas. Lisboa, Relegio D'Agua Editores Ltda, 1989.
- E.D. Pellegrino. "Philosophy of Medicine: Problematic and Potential. The Journal of Medicine and Philosophy 1(1)(1976)5-3.
- T.L. Beauchamp and J.F. Childress. Principles of Biomedical Ethics. 5th Edition. New York, NY: Oxford University Press, 2001.
- There is a growing literature on the ethics of research on human subjects in developing countries most of them referring to the ethics of clinical trials. See S.R. Benatar and P.A. Singer, " A new look at international research ethics" BMJ 321 (2000), 824-26; P.A. Singer " Medical Ethics" BMJ 321(2000), 282-85; D. Wilson " North-South research in developing countries must respond to community"s priorities". BMJ 319 (1999).1496.
11 M.G.F Souza, E.S. Azevedo, M.C.B.E Silva, N.B.V.M. Freire. " Brancos descendentes de negros na sociedade brasileira. Ciencia e Cultura 39(12)(1987),1186-89.
- A.R. Jonsen. A Short History of Medical Ethics. New York, Oxford University Press, 2000. Referring to the Tuskegee Revelations, the Author cites the New York Times, July 26, 1972, as well as the Chapter 5 of his book entitled "The Birth of Bioethics" .
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