Rather than overwhelming you with piles of information, you are being asked to think
carefully about the following five case studies. Two focus on the need for research regulation
to prevent abuse. Two question whether the way regulations are now enforced is overly
bureaucratic and unreasonable. Obviously, there is no “right” answer. But you are requested
to think critically about the following five case studies and come to your own reasoned
conclusion.
CASE ONE: THE TUSKEGEE EXPERIMENT
SOURCE: NPR (National Public Radio) (cf. http://www.npr.org/templates/story/story.php?
storyId=1147234)
July 25, 2002 –Thirty years ago today, the Washington Evening Star newspaper ran this
headline on its front page: “Syphilis Patients Died Untreated.” With those words, one of
America’s most notorious medical studies, the Tuskegee Syphilis Study, became public.
“For 40 years, the U.S. Public Health Service has conducted a study in which human guinea
pigs, not given proper treatment, have died of syphilis and its side effects,” Associated Press
reporter Jean Heller wrote on July 25, 1972. “The study was conducted to determine from
autopsies what the disease does to the human body.”
The next morning, every major U.S. newspaper was running Heller’s story. For Morning
Edition, NPR’s Alex Chadwick reports on how the Tuskegee experiment was discovered after
40 years of silence.
The Public Health Service, working with the Tuskegee Institute, began the study in 1932.
Nearly 400 poor black men with syphilis from Macon County, Ala., were enrolled in the
study. They were never told they had syphilis, nor were they ever treated for it. According
to the Centers for Disease Control, the men were told they were being treated for “bad
blood,” a local term used to describe several illnesses, including syphilis, anemia and
fatigue.
For participating in the study, the men were given free medical exams, free meals and free
burial insurance.
At the start of the study, there was no proven treatment for syphilis. But even after
penicillin became a standard cure for the disease in 1947, the medicine was withheld from
the men. The Tuskegee scientists wanted to continue to study how the disease spreads and
kills. The experiment lasted four decades, until public health workers leaked the story to the
media.
By then, dozens of the men had died, and many wives and children had been infected. In
1973, the National Association for the Advancement of Colored People (NAACP) filed a classaction
lawsuit. A $9 million settlement was divided among the study’s participants. Free
health care was given to the men who were still living, and to infected wives, widows and
children.
But it wasn’t until 1997 that the government formally apologized for the unethical study.
President Clinton delivered the apology, saying what the government had done was deeply,
profoundly and morally wrong:
“To the survivors, to the wives and family members, the children and the grandchildren, I
say what you know: No power on Earth can give you back the lives lost, the pain suffered,
the years of internal torment and anguish.
“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.”
CASE TWO: SUBJECT TO ABORIGINAL EXPERIMENTS
SOURCE: THE VANCOUVER SUN, July 16, 2013
By Bob Weber and Mike Hager
Recently published historical research says hungry aboriginal children and adults were once
used as unwitting subjects in nutritional experiments by Canadian government bureaucrats,
including at a residential school in Port Alberni on Vancouver Island.
“ This was the hardest thing I’ve ever written,” said Ian Mosby, who has revealed new
details about one of the least-known but perhaps most disturbing aspects of government
policy toward aboriginals immediately after the Second World War. . . .
The tests first began with a 1942 visit by government researchers to a number of remote
aboriginal reserve communities in northern Manitoba, including places such as The Pas and
Norway House.
They found people who were hungry, beggared by a combination of the collapsing fur trade
and declining government support. The population was demoralized and marked by, in the
words of the researchers, “shiftlessness, indolence, improvidence and inertia.” The
researchers suggested those problems — “so long regarded as inherent or hereditary traits
in the Indian race” — were in fact the results of malnutrition. Instead of recommending an
increase in support, the researchers decided that isolated, dependent, hungry people would
be ideal subjects for tests on the effects of different diets. . . .
“ In the 1940s, there were a lot of questions about what are human requirements for
vitamins. Malnourished aboriginal people became viewed as possible means of testing these
theories.”
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