Back to Tuskegee

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Kiosk-Style Slide Presentation with some interactivity presented at Purdue University Teaching, Learning, and Technology Conference 2003. Must download to fully experience.

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Back to Tuskegee

  1. 1. Life is all about choices …
  2. 2. Responsible Research Ethics and The Tuskegee Syphilis Study
  3. 3. <ul><li>Join me as we journey back to an age in America </li></ul><ul><ul><li>where the field of Medicine comes into its own, and </li></ul></ul><ul><ul><li>Optimism , </li></ul></ul><ul><ul><li>Progress </li></ul></ul><ul><ul><li>Science </li></ul></ul><ul><li>sit on the Throne of GOD </li></ul>Welcome to my Virtual Time Machine
  4. 4. All Aboard to the 20 th Century!
  5. 5. 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 1923 - 1952 Piaget describes stages of cognitive development
  6. 6. Syphilis the AIDS of an earlier time <ul><li>Untreated, it can lead to </li></ul><ul><ul><li>severe heart disease, </li></ul></ul><ul><ul><li>brain damage, </li></ul></ul><ul><ul><li>paralysis, and </li></ul></ul><ul><ul><li>death. </li></ul></ul><ul><li>The problem was, </li></ul><ul><li>until 1907, </li></ul><ul><li>no one could treat it. </li></ul>
  7. 7. Then Nobel Prize-winning microbiologist Paul Ehrlich discovered Salvarsan <ul><li>an arsenic-based compound. </li></ul><ul><li>It was the first chemotherapy. </li></ul>
  8. 8. The 1920’s was a progressive era in medicine <ul><li>Armed with confidence and the Scientific Method, </li></ul><ul><li>U.S. Public Health Service officials were determined </li></ul><ul><li>to control syphilis in their time. </li></ul><ul><li>They set up free treatment clinics throughout the south, </li></ul><ul><li>including Macon county, Alabama, </li></ul><ul><li>home to the Tuskegee Institute. </li></ul>
  9. 9. But in 1932, the funding for treatment ran out. <ul><li>While writing the final report, </li></ul><ul><li>Dr. Taliaferro Clark, head of the PHS Venereal Disease Division </li></ul><ul><li>conceived an idea to salvage the study … </li></ul><ul><li>Macon county “offered an unparalleled opportunity </li></ul><ul><li>for the study of the effect of untreated syphilis ” </li></ul><ul><li>in the Negro male. </li></ul>
  10. 10. The Study of Untreated Syphilis in the Negro male (1932 – 1972) <ul><li>was only supposed to last a year … </li></ul><ul><li>but then Dr. Raymond Vondelehr </li></ul><ul><li>advocated continuing the study </li></ul><ul><li>to get autopsies. </li></ul><ul><li>Autopsies would confirm clinical observation </li></ul><ul><li>and therefore greatly contribute </li></ul><ul><li>to the study’s scientific reliability. </li></ul>
  11. 11. “ Bringing them to Autopsy” <ul><li>By the time the story finally hit the newspapers in 1972, </li></ul><ul><li>the experiment had gone on for 40 years . </li></ul><ul><li>During all this time, it was no secret </li></ul><ul><li>to the wider medical community. </li></ul><ul><li>Results of the study had been published </li></ul><ul><li>in well known medical journals. </li></ul>
  12. 12. Yet no one ever questioned the study.
  13. 13. “ Bad Blood” <ul><li>Macon county residents were very poor. </li></ul><ul><li>They lived and died without medical care </li></ul><ul><li>because they could not afford it. </li></ul><ul><li>They didn’t distinguish between syphilis </li></ul><ul><li>and a host of other maladies </li></ul><ul><li>which they termed </li></ul><ul><li>“ bad blood.” </li></ul>
  14. 14. “ Bad Blood” <ul><li>They traveled great distances </li></ul><ul><li>to get a little free medical care </li></ul><ul><li>from the government doctors </li></ul><ul><li>whom they trusted. </li></ul><ul><li>The government doctors </li></ul><ul><li>simply told them </li></ul><ul><li>they had “bad blood.” </li></ul>
  15. 15. 399 Participants never told they had syphilis. <ul><li>None were offered a cure. </li></ul><ul><li>Even when penicillin became available in 1943, </li></ul><ul><li>researchers intervened </li></ul><ul><li>to keep subjects </li></ul><ul><li>from getting penicillin </li></ul><ul><li>so the study could continue. </li></ul>
  16. 16. <ul><li>100 men died from related complications. </li></ul><ul><li>At least 40 wives were infected. </li></ul><ul><li>19 children contracted congenital syphilis at birth. </li></ul><ul><li>A whole people’s trust was shattered. </li></ul><ul><li>28 men died of syphilis. </li></ul>
  17. 17. “ Nothing learned will prevent, find, or cure a single case.”
  18. 18. When the story finally hit the newspapers in 1972 <ul><li>The ensuing investigation concluded </li></ul><ul><ul><li>&quot;Society can no longer afford </li></ul></ul><ul><ul><li>to leave the balancing </li></ul></ul><ul><ul><li>of individual rights </li></ul></ul><ul><ul><li>against scientific progress </li></ul></ul><ul><ul><li>to the scientific community.&quot; </li></ul></ul>
  19. 19. 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.
  20. 20. The 3 Basic Ethical Principles of the Belmont Report Respect for Persons Benefice Justice
  21. 21. Respect for Persons <ul><li>Definition : </li></ul><ul><li>Individuals should be treated as autonomous agents </li></ul><ul><li>Persons with diminished autonomy are entitled to protection </li></ul><ul><li>Application : </li></ul><ul><li>Voluntary Informed Consent </li></ul>Belmont Report
  22. 22. Benefice <ul><li>Definition: </li></ul><ul><li>Do not harm </li></ul><ul><li>Maximize possible benefits </li></ul><ul><li>Minimize possible harms </li></ul><ul><li>Application : </li></ul><ul><li>Assessment of risks and benefits </li></ul>Belmont Report
  23. 23. Justice <ul><li>Definition: </li></ul><ul><li>Who should receive the benefits of research? </li></ul><ul><li>Who should bear its burdens? </li></ul><ul><li>Application: </li></ul><ul><li>Equitable Selection of Subjects </li></ul>Belmont Report
  24. 24. Even after exposure and public outcry <ul><li>brought the study to a halt in 1972 </li></ul><ul><li>and even after settling an expensive lawsuit, </li></ul><ul><li>the U.S. Government </li></ul><ul><li>never formally admitted </li></ul><ul><li>to any wrong-doing </li></ul><ul><li>until 1997 . </li></ul>
  25. 25. The 1997 Presidential Apology http://www.npr.org/programs/morning/features/2002/jul/tuskegee/
  26. 26. Consider the following statement <ul><li>by Tuskegee Researcher John Heller </li></ul><ul><li>about the 1946 Nuremberg Trials … </li></ul>
  27. 27. “ I, like most everybody else, <ul><li>“ was horrified at the things that were practiced upon these Jewish people, </li></ul><ul><li>such as doing experiments while the patients were not only alive </li></ul><ul><li>but doing such things as would cause their deaths. </li></ul><ul><li>“ All these sorts of things were horrendous to me </li></ul><ul><li>and I, like most everyone else, deplored them.” </li></ul><ul><li>Dr. John R. Heller, Researcher, Tuskegee Syphilis Study </li></ul>
  28. 28. The Tuskegee Study started in 1932 and continued for 40 years, well past the 1946 Nuremberg trials.
  29. 29. Why do you think nobody saw a connection between Nuremberg and the Tuskegee Syphilis Study?
  30. 30. More Questions to Consider <ul><li>Why should we be concerned about Human Subject Research? </li></ul><ul><li>  </li></ul><ul><li>Do you think another Tuskegee could happen in the future? </li></ul><ul><li>  </li></ul><ul><li>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? </li></ul><ul><li>  </li></ul><ul><li>and finally … </li></ul>
  31. 31. 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! 1923 - 1952 Piaget describes stages of cognitive development
  32. 32. Life is all about choices … choices have consequences Now it’s your turn - how will YOU choose ?
  33. 33. 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.). David at Frogstone for the image Femme used in backdrop. The Faces of Tuskegee website at MSU.

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