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Editorials Tuskegee: Could It Happen Again?

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Editorials Tuskegee: Could It Happen Again? Postgrad Med J 2001;77:553–555 553 Postgrad Med J: first published as 10.1136/pmj.77.911.554 on 1 September 2001. Downloaded from Editorials Tuskegee: could it happen again? The Tuskegee Syphilis Study is often paired with the hor- But nearly 30 years after the Tuskegee study was exposed rific Nazi experiments as the prime examples of what hap- and four years after an apology on behalf of the United pens when powerless subjects, the state’s coercive power, States federal government from President Bill Clinton was racism, and medical research are unmoored from ethical finally tendered to the remaining survivors and their fami- concerns. In the Tuskegee study, over 400 African- lies, the international health care community’s hope that it American men with late stage syphilis were never told they could never happen again is fading fast. We live in the age were in a 40 year long (1932–72) experiment sponsored by of the globalisation of research where international and the United States Public Health Service to study multicentre trials are becoming the norm, where huge “untreated syphilis in the male Negro”. The men were not sums of money can be made or lost as a result, and where directly oVered treatment, even though they were told that professional reputations and careers are built on grant get- the aspirins, tonics, and rubs were to help cure their “bad ting ability. Moral statements from international medical blood”. With the support of community based physicians bodies, over-worked governmental regulators, and quickie and nurses, the local standard of “no care” in Alabama’s courses on ethics in our health science schools and for “black belt” became an orchestrated reality, even after continuing education credit may no longer be enough to penicillin became widely available in the late l940s. The protect us from the modern day equivalents of what medical uncertainty over how to treat late stage syphilis happened in Tuskegee. The mounting evidence suggests it http://pmj.bmj.com/ and the desire to hold on to the subjects became the cover is time to consider that the moral and institutional for the deceit that was perpetuated at Tuskegee. The gov- structures we put in place may no longer be strong enough ernment supported physician/scientists who ran the study to hold back an abusive tide. went on to greater fame in their careers; although there was Consider what a recent series in the Washington Post a lawsuit, no one was ever legally punished for what was reported. A drug company begins a clinical trial of a new done. drug in Nigeria in the midst of a meningitis epidemic, but The ethical systems put in place after World War II and does not provide the usual standard of care when a on September 24, 2021 by guest. Protected copyright. after the outcry over Tuskegee did change the regulations subject’s condition worsens. Even though there is another that supposedly now govern human subject research. Gov- group of international physicians nearby providing treat- ernmental regulating bodies, institutional review boards, ment, the patient dies. Placebo trials on HIV vertical trans- data and ethics monitoring committees, and ethics courses mission take place in Thailand, the Ivory Coast, and were established or strengthened to obviate the possibility Uganda even though zidovudine (AZT) is given in the of a reoccurrence of abuses of this magnitude. Informed West to HIV positive pregnant women. The infants born to consent and an emphasis on the rights of the subject, not these women in the placebo arm develop AIDS. Local just the duties of the doctor, have become central to our doctors and nurses in Eastern Europe, Latin America, ethical beliefs and to internationally promulgated stand- Asia, and Africa are rewarded with money, trips, and other ards. research positions as they enrol illiterate patients in British physician Thomas Percival’s 1803 guide on questionable circumstances, with little informed consent, medical ethics that claimed “beneficent deception” where and under coercive governmental support in more and “if men do not perceive it an injury to be deceived, there is more international drug company sponsored trials. In no crime in false speech about such matters” no longer China, ill informed “subjects” are donating their blood for governs our notions of informed consent or ethical behav- genetics testing and are promised free medical care that iours. We have returned, at least at the rhetorical level, to never arrives. Claude Bernard’s l9th century admonition that “the prin- Questionable documentation from these kinds of studies ciple of medical and surgical morality, therefore, consists in increasingly forms part of the basis for new drug never performing on man an experiment which might be applications to governmental regulatory bodies in the West harmful to him to any extent, even though the result might where the drugs are approved and then marketed. Are we be highly advantageous to science, that is, to the health of ethically still in a small country town in mid-20th century others”. Alabama? Or has it just moved outside the borders of the www.postgradmedj.com 554 Editorial Postgrad Med J: first published as 10.1136/pmj.77.911.554 on 1 September 2001. Downloaded from United States? Is this what the globalisation of health care United States, the National Bioethics Advisory Commis- research has come to mean? sion in October has asked that treatment be oVered Few would argue that no human research should be subjects after research is completed, even if such drugs are done. Henry Beecher, the renowned American physician not available in the host country. In each of these who authored the l966 landmark paper on ethical failures suggestions we can see reflected the eVorts to not repeat in medical research, declared “The well-being, the health, what happened at Tuskegee: the failure to treat, the even the actual potential life of all human beings born or willingness to accept “community” standards, the linkage unborn, depend upon continuing experimentation in man. between a higher power and local health personnel, and the Proceed it must; proceed it will”. But as it proceeds, we underlying racism that devalues subjects’ lives away from cannot expect that the solution to the ethical dilemmas the metropolitan centres. encountered will appear either dues ex machina or from his- All of these eVorts are important turning points in our torical precedent. Historical precedent itself is too easily understanding of medical science’s responsibilities toward made into a false god to whom prayers are useless. subjects. They highlight the diYculties in situations where To make sure Tuskegee does not reappear in our news- coercion, illness, and poverty are rife and researchers can papers bearing the name of a town in Swahili or Mandarin cover their own eVorts with a seemingly humanitarian will take political will, a commitment to justice, and a fair gauze. Organised consumer groups, the government, and assessment of the reality of health care in an international health professional organizations have to be willing to context. We will have to gain a more sophisticated demand other changes. We need serious sanctions against understanding of what is possible in situations where those who violate these new rules and principles. We patients have few choices, where national per capita health should link new drug approval at the governmental level to care expenditures are less than what a western teenager can evidence of treatment provided to the subjects. We must spend on her or his music collection, and where AIDS and place more educated consumers on review boards to ques- other epidemics are endemic. tion seemingly scientific decisions and to watch for In the last year, international medical groups and violations of informed consent. We ought to be considering bioethics commissions and councils in both the United tying international law on human rights abuse to medical Kingdom and the United States have issued advisories on research. international research. Responding to concerns over the Without our commitment to such elemental justice, the HIV transmission trials, representatives of the World next Tuskegee is surely now being planned. And the new Medical Association last October approved revisions in the drugs appearing on our shelves may be manufactured from Declaration of Helsinki (the guidelines for biomedical more than a diVerent kind of “bad blood”. research on human subjects) to condemn use of placebos in trials where known treatments are available. In the United Kingdom, the NuYeld Council on Bioethics has Susan M Reverby is a health care historian and editor of Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study (Chapel Hill: University of North Carolina just completed a four month period of asking for Press, 2000). From 1993–96 she served as the consumer representative on the comments on its paper on “the ethics of clinical research in US Food and Drug Administration’s Ob-Gyn Advisory Panel. developing countries”. They suggested the need for new S M REVERBY “intermediate” guidelines between the broad principles Professor of Women’s Studies, Wellesley College, articulated through international tribunals and the practi- Wellesley, MA 02l39, USA cal realities in often poor and desperate countries. In the [email protected] http://pmj.bmj.com/ Getting our journals to developing countries For some years now it has been the policy of the BMJ Pub- the rapid response facility on the web site in a way that was on September 24, 2021 by guest. Protected copyright. lishing Group to give free subscriptions to its journals to almost impossible with the slowness of print distribution. applicants from countries in the developing world. Access to the electronic edition of the Postgraduate However, in practice this has had its diYculties.
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