Life is all about choices Responsible Research Ethics and The Tuskegee Syphilis Study

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Slide 2 Life is all about choices Slide 3 Responsible Research Ethics and The Tuskegee Syphilis Study Slide 4 Join me as we journey back to an age in America wwhere the field of Medicine comes into its own, and OOOOptimism, PPPProgress SSSScience sit on the Throne of GOD Welcome to my Virtual Time Machine Slide 5 All Aboard to the 20 th Century! Slide 6 1923 - 1952 Piaget describes stages of cognitive development First Test Tube Baby Born 1978 First Human Heart Transplant Year - 1967 First successful Open Heart Surgery - 1952 Penicillin - 1940 sulfa drugs - 1932 First Electrocardiogram 1903 Back to Tuskegee Slide 7 Syphilis the AIDS of an earlier time Untreated, it can lead to severe heart disease, brain damage, paralysis, and death. The problem was, until 1907, no one could treat it. Slide 8 Then Nobel Prize-winning microbiologist Paul Ehrlich discovered Salvarsan an arsenic-based compound. It was the first chemotherapy. Slide 9 The 1920s was a progressive era in medicine Armed with confidence and the Scientific Method, U.S. Public Health Service officials were determined to control syphilis in their time. They set up free treatment clinics throughout the south, including Macon county, Alabama, home to the Tuskegee Institute. Slide 10 While writing the final report, Dr. Taliaferro Clark, head of the PHS Venereal Disease Division conceived an idea to salvage the study Macon county offered an unparalleled opportunity for the study of the effect of untreated syphilis in the Negro male. But in 1932, the funding for treatment ran out. Slide 11 The Study of Untreated Syphilis in the Negro male (1932 1972) was only supposed to last a year but then Dr. Raymond Vondelehr advocated continuing the study to get autopsies. Autopsies would confirm clinical observation and therefore greatly contribute to the studys scientific reliability. Slide 12 Bringing them to Autopsy By the time the story finally hit the newspapers in 1972, the experiment had gone on for 40 years. During all this time, it was no secret to the wider medical community. Results of the study had been published in well known medical journals. Slide 13 Yet no one ever questioned the study. Slide 14 Bad Blood Macon county residents were very poor. They lived and died without medical care because they could not afford it. They didnt distinguish between syphilis and a host of other maladies which they termed bad blood. Slide 15 Bad Blood They traveled great distances to get a little free medical care from the government doctors whom they trusted. The government doctors simply told them they had bad blood. Slide 16 399 Participants never told they had syphilis. None were offered a cure. Even when penicillin became available in 1943, researchers intervened to keep subjects from getting penicillin so the study could continue. Slide 17 100 men died from related complications. At least 40 wives were infected. 19 children contracted congenital syphilis at birth. A whole peoples trust was shattered. 28 men died of syphilis. Slide 18 Nothing learned will prevent, find, or cure a single case. Slide 19 When the story finally hit the newspapers in 1972 The ensuing investigation concluded "Society can no longer afford to leave the balancing of individual rights against scientific progress to the scientific community." Slide 20 The Tuskegee Syphilis Study - became a major factor in the writing of the 1979 Belmont Report which guides human subject research today in the U.S. Slide 21 The 3 Basic Ethical Principles of the Belmont Report Respect for Persons Benefice Justice Slide 22 Respect for Persons Definition: Individuals should be treated as autonomous agents Persons with diminished autonomy are entitled to protection Application: Voluntary Informed Consent Belmont Report Slide 23 Benefice Definition: Do not harm Maximize possible benefits Minimize possible harms Application: Assessment of risks and benefits Belmont Report Slide 24 Justice Definition: Who should receive the benefits of research? Who should bear its burdens? Application: Equitable Selection of Subjects Belmont Report Slide 25 Even after exposure and public outcry brought the study to a halt in 1972 and even after settling an expensive lawsuit, the U.S. Government never formally admitted to any wrong-doing until 1997. Slide 26 The 1997 Presidential Apology Slide 27 Consider the following statement by Tuskegee Researcher John Heller about the 1946 Nuremberg Trials Slide 28 I, like most everybody else, was horrified at the things that were practiced upon these Jewish people, such as doing experiments while the patients were not only alive but doing such things as would cause their deaths. All these sorts of things were horrendous to me and I, like most everyone else, deplored them. Dr. John R. Heller, Researcher, Tuskegee Syphilis Study Slide 29 The Tuskegee Study started in 1932 and continued for 40 years, well past the 1946 Nuremberg trials. Slide 30 Why do you think nobody saw a connection between Nuremberg and the Tuskegee Syphilis Study? Slide 31 More Questions to Consider Why should we be concerned about Human Subject Research? Do you think another Tuskegee could happen in the future? Can you envision yourself ever being faced with an ethical dilemma in Human Subjects research? What are some guidelines or resources you could turn to? and finally Slide 32 1923 - 1952 Piaget describes stages of cognitive development First Test Tube Baby Born 1978 First Human Heart Transplant Year - 1967 First successful Open Heart Surgery - 1952 Penicillin - 1940 sulfa drugs - 1932 First Electrocardiogram 1903 Back to the Future! Slide 33 choices have consequences Now its your turn - how will YOU choose? Life is all about choices Slide 34 The author wishes to acknowledge the following resources used in creating this presentation on Responsible Research Ethics: James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment, New York: The Free Press, 1993 (expanded ed.). DavidDavid at Frogstone for the image Femme used in backdrop.FrogstoneFemme The Faces of Tuskegee website at MSU.Faces of Tuskegee website