Research Ethics, Whistle Blower & Tuskegee Experiment

What was done cannot be undone. But we can end the silence. We can stop turning our heads away. We can look at you in the eye and finally say on behalf of the American people, what the United States government did was shameful, and I am sorry.

–          Bill Clinton, May 16, 1997

In 1932 U.S Public Health Service at Tuskegee Institute in Tuskegee, Alabama, conducted a study to determine effect of untreated syphilis in black men. It was supposed to be a six months project. But what happened in reality was not just unethical but inhuman.

Instead of six months the study continued for 40 years—from 1932 to 1972. The study included 600 black men, 399 with syphilis and a control group of 201 who did not have the disease. The men in the study were the sons and grandsons of slaves. Most had never been seen by a doctor. The researchers made announcements in churches and cotton fields for participation, many volunteered thinking that they would free medical treatment.

tusk 2

The men in the study were never told that they had syphilis, a sexually transmitted disease. Instead, government doctors told the men they had “bad blood,” a term that was commonly used to describe a wide range of unspecified maladies.

In the mid-1940s, when penicillin became the standard cure for syphilis, the Tuskegee subjects were not given the drug. Even as some men went blind and insane from advanced (tertiary) syphilis, the government doctors withheld treatment and prevented subjects from getting treatment from other doctors in the region as their primary interest was in observing advancement of disease and then doing autopsy. To ensure that the families would agree to this final procedure, the government offered them burial insurance—of $50—to cover the cost of a casket and grave.

tuske 1

One interesting fact about this experiment was role played by a black nurse called Eunice Rivers who was part of these experiments from beginning to end i.e. for 40 years and was actively involved in getting volunteers for experiment and preventing them from getting treated by other doctors in the region. Later a film was made on these experiments called – Miss Ever’s Boys.

evers boys

The research project was finally stopped after Peter Buxtun, a former employee of PHS, blew whistle and shared the truth about the study’s unethical methods with a journalist Jean Heller. On July 25, 1972, the truth was published in newspapers; it resulted in public outcry that ultimately brought the notorious experiment to an end.

tusk 3

This episode resulted in strengthening guidelines for protection of human subjects in research. Fred Gary, a civil rights attorney, filed a class-action lawsuit on behalf of the men that resulted in a $10 million out-of-court settlement for the victims, their families, and their heirs.

“I want to live in peace and harmony. How can we love the Lord, whom we’ve never seen, and hate our fellow men, whom we see every day? I want to get along.”

–          Herman Shaw, survivor of Tuskegee Experiment.

Finally in 1997, Bill Clinton apologised to survivors of Tuskegee experiments.

herman shaw

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s