Post on 28-Nov-2014
description
Life is all about choices …
Responsible Research EthicsResponsible Research Ethicsandand
The Tuskegee Syphilis StudyThe Tuskegee Syphilis Study
Join me as we journey back to an age in America
– where the field of Medicine comes into its own, and
–OptimismOptimism, –ProgressProgress–ScienceScience
•sit on the Throne of GOD
Welcome to my Virtual Time Machine
All Aboard to the 20th Century!
1923 - 1952 Piaget
describes stages of
cognitive development
First T
est T
ube Bab
y Born
197
8
First Human Heart Transplant Year - 1967
First successful Open Heart Surgery - 1952
Penicillin - 1940
sulfa drugs - 1932
First Electrocardiogram 1903
Back to TuskegeeBack to Tuskegee
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.
Then Nobel Prize-winning microbiologist Paul Ehrlich discovered Salvarsan
• an arsenic-based compound.• It was the first chemotherapy.
The 1920’s 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.
• 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.
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 study’s scientific reliability.
“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.
Yet no one ever questioned the study.
“Bad Blood”
• Macon county residents were very poor.• They lived and died without medical care• because they could not afford it.• They didn’t distinguish between syphilis• and a host of other maladies • which they termed • “bad blood.”
“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.”
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.
• 100 men died from related complications.
• At least 40 wives were infected.
• 19 children contracted congenital syphilis at birth.
• A whole people’s trust was shattered.
• 28 men died of syphilis.
“Nothing learned will prevent, find, or cure a single case.”
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."
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.
The 3 Basic Ethical Principlesof the Belmont Report
Respect for Persons
Benefice
Justice
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
Benefice
Definition:• Do not harm• Maximize possible benefits• Minimize possible harms
Application: • Assessment of risks and benefits
Belmont Report
Justice
Definition:• Who should receive the benefits of
research?• Who should bear its burdens?
Application:• Equitable Selection of Subjects
Belmont Report
Even after exposure and public outcryEven 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.
The 1997 Presidential ApologyThe 1997 Presidential Apology
http://www.npr.org/programs/morning/features/2002/jul/tuskegee/
Consider the following statement
• by Tuskegee Researcher John Heller• about the 1946 Nuremberg Trials …
“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
The Tuskegee Study started in 1932 and continued
for 40 years, well past the 1946 Nuremberg trials.
Why do you think nobody saw a Why do you think nobody saw a connection between Nuremberg connection between Nuremberg and the Tuskegee Syphilis and the Tuskegee Syphilis Study?Study?
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 …
1923 - 1952 Piaget
describes stages of
cognitive development
First T
est T
ube Bab
y Born
197
8
First Human Heart Transplant Year - 1967
First successful Open Heart Surgery - 1952
Penicillin - 1940
sulfa drugs - 1932
First Electrocardiogram 1903
Back to the Future!
choices have consequences
Now it’s your turn - Now it’s your turn - how will YOU choosehow will YOU choose??
Life is all about choices …
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.