Ethics purpose, expected duration and procedures of the
Ethics in Research Research is a systematic, formal rigorous and precise process employed to gain solutions to the problems and/or to discover and interpret new facts and relationships (Waltz and Bausell, 1981). Each and every ethical standard related to the research should be followed. But, The Tuskegee Syphilis Experiment is one of the best examples of research done with violation of basic ethical principles of conduct. The Tuskegee syphilis experiment was a clinical trial done on human beings between 1932 and 1972 in Tuskegee, Alabama, by the U. S.Public Health Service.
They were doing research related to the natural progression of the disease syphilis. The forty years long study, while the initial goal was to follow the route of untreated Syphilis for 6 to 9 months, followed by treatment of participant group, was controversial for many reasons related to ethical standards. Informed Consent The study was conducted on 399 African-American sharecroppers with syphilis. Researchers did not inform them about the study or its real purpose. Instead, the men had been misguided that they were being treated for “bad blood”.There was no evidence that Researcher has given all the facts required to provide informed consent. The fact that finally autopsies would be required, was also concealed.
The researchers did not inform the participants regarding the purpose, expected duration and procedures of the research. They also did not explained the participants regarding their rights to withdraw from the study, once the participation has begun. Adequate Debriefing The groups selected for study were primarily poor, illiterate share croppers.
Most of them had hardly ever seen a doctor before.They were unaware of their syphilis infection. They were told that they will receive the treatment for their “bad blood”. So, poor share croppers thought that doctor will save them from their illness. The researcher never told the participants regarding the real nature, results, and conclusions of the study. The participants were never given any information regarding the seriousness of their syphilis infection. The doctors had no further interest in these patients until they die because the data for the experiment was to be collected from the autopsies of the men.
The participants were deliberately left to deteriorate under the complications of tertiary syphilis-which include tumors, heart diseases, neural degeneration, paralysis, insanity, and ultimately death. Protection from Harm The study participants received medical examinations, but they were either not treated or were treated with very low doses of medicines that was found to be insufficient to cure the disease. During the study, PHS officials denied treatment for study participants. They also prevented other agencies to give treatment to the affected group.Even after Penicillin was discovered by the World War II and widely used to treat the cases of syphilis, the participant were protected from receiving the treatment by the request of PHS officials to the draft boards. In 1952, the PHS took help of local health departments to follow the participants who had left the Macon County, and till the end of the study in 1970, local health department also helped PHS, so that the study subjects were kept out of receiving the treatment. Deception in Research Researchers deceive prospective participant groups about the experiment which had caused physical pain and severe emotional distress.
The aftermath of the study was very dangerous. By the end of the experiment, 28 of the men had died directly of the syphilis, 100 were dead of related complications, 40 of their wives had been infected, and 19 of their children had been born with congenital syphilis (Borgna Brunner, The Tuskegee syphilis Experiment). In addition, the mistrust for public health institutions within the African American community can be seen today due to the fear generated by the aftermaths of the Tuskegee study.
Freedom from Coercion The researchers used coercive methods to prevent participants from drop out of the study.The PHS doctors required the sample of spinal fluid from the participants to know the progress of the disease. But for these, spinal tap was required which was painful and potentially dangerous procedure to obtain sample. They misled the participants by using promotional words, so participants would not drop out from the experiment. Even when the new highly effective treatment with Penicillin became widely used, the participants were never given option to quit from the study. Inducements The participants were given free health examinations, free meals, transportation services and burial insurance.Burial stipends were given purposefully so that researchers can get permission from family members to do autopsies on study group which was important for them to get results for their study.
They were given free health examinations and treatment for everything except syphilis. Even the Surgeon General of U. S.
was involved in promoting the participants to prevent drop out, by sending them certificates of appreciation after 25 years in the study. Confidentiality Psychologists should protect confidential information obtained through or stored in any Medium. APA, Ethical Principles of Psychologists and Code of Conduct, Maintaining Confidentiality, 4. 01) In Tuskegee Syphilis study, nothing was kept secret. Throughout the studies, for about three decades, periodically all the data were published in medical periodical literature, which was read by thousands of doctors and medical researchers.
The general public was unaware about it until the Associated Press published a news report in July 1972. When the participants went for second opinion to another hospital, the hospitals were also informed that these individual has syphilis. So they are restricted from treatment.Without the consent or knowledge of participants, all information was released through journals and media. U.
S National Institute of Health Requirement The Tuskegee Syphilis Study did not followed the guidelines of United States NIH requirements. Most of the study subjects selected were 25 years of age or older. Researchers selected only male subjects, they didn’t selected women and children, though women and children can also be a victim of syphilis. The female subjects were not selected, who probably had the infection transmitted from men and gave birth to children who suffered from congenital syphilis.They selected only African-American poor Negro people, whereas if a research involving human subject is to be done, women and minorities and their subpopulation should also be included.
It should also be diverse, involving different racial and ethnic categories. In my opinion, it seems to be combination of financial, racial, and political factors which led to damage of real research purpose. In the beginning, due to financial loss, the study subjects who were healthy and not having syphilis were purposefully dropped out from experiment.
Why the researchers selected only African-American people, though they know that outcomes of the syphilis may be death, followed by birth of their children with congenital syphilis? A $10 million out-of-court settlement for the men and their families was filed by a lawyer, blaming white American and their organizations, though African-American doctors, nurses and institutions were also involved since beginning of the experiment. References American Psychological Association. (1992).
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qmu. ac. uk/psych/Rtrek/foundation/f8. htm Gray, Fred D. (1998). The Tuskegee Syphilis Study: the real story and beyond Tuskegee Institute, The Study revealed, ch.
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