[dehai-news] (NBC) Horrific Medical Tests of Past Raise Concerns for Today


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From: Ghidewon@aol.com
Date: Sat Oct 02 2010 - 08:36:37 EDT


Horrific medical tests of past raise concerns for today
By Arthur Caplan, Ph.D.
_http://www.msnbc.msn.com/id/39463624/ns/health-health_care/_
(http://www.msnbc.msn.com/id/39463624/ns/health-health_care/)
 
 The astounding revelation that U.S. medical researchers intentionally
gave Guatemalans gonorrhea and syphilis more than 60 years ago is so
horrifying that we want to believe that what happened then could never happen
today. We want to believe that doctors are treating the poor, vulnerable and
those outside the U.S. with more care and respect.
 
But are they? Have we really learned what we should have from the travesty
of past medical experiments?
 
In recent years, there has been a steady shift of clinical research from
testing in the U.S. and other developed nations to the developing world. A
report from the United States Department of Health and Human Services noted
that roughly 80 percent of drug approvals in 2008 were based in part on
data from outside the U.S. Eight percent of drugs approved for use in the U.S.
were only tested using subjects in foreign nations.
 
As more testing is outsourced to other nations, there is a very real moral
worry that we are still exploiting the poor to serve as guinea pigs so we
can improve our medical care.
 
As we keep learning, it has happened too many times in the past.
 
Susan Reverby, a distinguished historian at Wellesley College in
Massachusetts, has spent her career shedding light on past horrors. She has long
researched the infamous Tuskegee Syphilis Study, the experiment where poor,
black men in rural Alabama were deliberately left untreated for syphilis by
government researchers eager to learn about the disease’s effects. The
study, somehow, was allowed to run from 1932 to 1972.
Story: U.S. apologizes for Guatemala STD experiments
 
More recently, Reverby came across documents that showed that Dr. John C.
Cutler, a physician who would later be one of the researchers involved in
the Tuskegee study, was involved in a completely unethical research study
much earlier in Guatemala.
 
Cutler, who went to his grave defending the Tuskegee experiment, directly
inoculated unknowing prisoners in Guatemala with syphilis and also
encouraged them to have sex with diseased prostitutes for his research from 1946-48.
 
It’s easy to think he was a rogue doctor or a mad scientist. But his work
was sponsored by lauded organizations such as the United States Public
Health Service, the National Institutes of Health with collaboration of the Pan
American Health Sanitary Bureau (now the Pan American Health
Organization), and the Guatemalan government.
 
Reverby's discovery of this awful chapter in the history of American
medical research set off a whirlwind of activity among American officials.
Secretary of State Hillary Clinton and Health and Human Services Secretary
Kathleen Sebelius have already offered formal apologies to the nation of
Guatemala. President Obama was scheduled to call the country's president as well.
 
At the time of the Guatemalan experiment, no federal rules were in place
governing the protection of human subjects, noted Dr. Francis Collins, the
director of the National Institutes of Health.
 
Nonetheless, officials knew it was wrong.
 
The surgeon general at the time, Dr. Thomas Parran, said, ”You know, we
couldn’t do such an experiment in this country.”
 
So why is all this so important? Why is an unethical prison study done 60
years ago of any concern today?
 
There are two reasons. The impact of Tuskegee experiment has had a lasting
effect on the lack of trust and suspicion minorities have about medical
research. And it renews ongoing ethical uncertainly about conducting studies i
n poor nations.
 
Secret testing of Guatemalans may renew minorities mistrust
 
Tuskegee lives on in the memory of the African-American community. Trust
in medical research remains tenuous because of what was done to
great-grandparents and friends. Many African-Americans believe that the government let
doctors give people syphilis. While that did not happen in Tuskegee, the
revelation of the Guatemalan research is a stark reminder that racism and
indifference to the weak and the vulnerable did permit incredible abuses.
 
The horrific study is a reminder that we need to remain vigilant about the
ethics of doing research using subjects who may be desperate for any type
of medical attention or who may not fully understand what they are being
asked to do.
 
Some of the best researchers in America were involved with Tuskegee and
the Guatemalan syphilis studies. That was no guarantee that what they did was
ethical then — nor is it now.
 
Arthur Caplan is director of the Center for Bioethics at the University of
 Pennsylvania.
 
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U.S. apologizes for Guatemala STD experiments
Government researchers infected patients with syphilis, gonorrhea without
their consent in the 1940s
By Robert Bazell Chief science and health correspondent
NBC News, updated 10/1/2010 7:19:05 PM ET
_http://www.msnbc.msn.com/id/39456324/ns/health-sexual_health_
(http://www.msnbc.msn.com/id/39456324/ns/health-sexual_health)
 
 U.S. government medical researchers intentionally infected hundreds of
people in Guatemala, including institutionalized mental patients, with
gonorrhea and syphilis without their knowledge or permission more than 60 years
ago.
 
Many of those infected were encouraged to pass the infection onto others
as part of the study.
 
About one third of those who were infected never got adequate treatment.
 
On Friday, Secretary of State Hillary Clinton and Health and Human
Services Secretary Kathleen Sebelius offered extensive apologies for actions taken
by the U.S. Public Health Service.
 
"The sexually transmitted disease inoculation study conducted from
1946-1948 in Guatemala was clearly unethical," according to the joint statement
from Clinton and Sebelius. "Although these events occurred more than 64 years
ago, we are outraged that such reprehensible research could have occurred
under the guise of public health. We deeply regret that it happened, and we
apologize to all the individuals who were affected by such abhorrent
research practices."
 
Secretary Clinton called Guatemalan president Alvara Cabellaros Thursday
night to reaffirm the importance of the U.S. relationship with the Latin
American country. President Barack Obama called Cabellaros Friday afternoon,
according to a statement from White House press secretary Robert Gibbs.
 
"The people of Guatemala are our close friends and neighbors in the
Americas," the government statement says. "As we move forward to better
understand this appalling event, we reaffirm the importance of our relationship with
Guatemala, and our respect for the Guatemalan people, as well as our
commitment to the highest standards of ethics in medical research."
 
During a conference call Friday with National Institutes of Health
Director Francis Collins and Assistant Secretary of State Arturo Valenzuela,
officials noted that there were no formalized regulations regarding protection
of human studies during the 1940s.
Story: Horrific medical tests of past raise concerns for today
 
In addition to the apology, the U.S. is setting up commissions to ensure
that human medical research conducted around the globe meets "rigorous
ethical standards." U.S. officials are also launching investigations to uncover
exactly what happened during the experiments.
 
The episode raises inevitable comparisons to the infamous Tuskegee
experiment, the Alabama study where hundreds of African-American men were told
they were being treated for syphilis, but in fact were denied treatment. That
U.S. government study lasted from 1932 until press reports revealed it in
1972.
 
The Guatemala experiments, which were conducted between 1946 and 1948,
never provided any useful information and the records were hidden.
 
They were discovered by Susan Reverby, a professor of women's studies at
Wellesley College in Massachusetts and were posted on her website.
 
According to Reverby’s report, the Guatemalan project was co-sponsored by
the U.S. Public Health Service, the NIH, the Pan-American Health Sanitary
Bureau (now the Pan American Health Organization) and the Guatemalan
government. The experiments involved 696 subjects — male prisoners and female
patients in the National Mental Health Hospital.
 
The researchers were trying to determine whether the antibiotic penicillin
could prevent syphilis infection, not just cure it, Reverby writes. After
the subjects were infected with the syphilis bacteria — through visits with
prostitutes who had the disease and direct inoculations — it is unclear
whether they were later cured or given proper medical care, Reverby notes.
While most of the patients got treatment, experts estimate as many as a
one-third, did not.
 
Secret testing of Guatemalans may renew minorities mistrust
 
The STD experiments were conducted with the cooperation of the Guatemalan
government. During that time, the U.S. -- which had a long association with
the Guatemalan military -- exerted a powerful influence in the Latin
American country, largely in order to protect the interests of the
American-based United Fruit Company. In 1954 the U.S. CIA helped overthrow Guatemala’s
democratically elected president because of land reforms that opposed the
multinational corporation.
 
Reverby, who has written extensively about the Tuskegee experiments, found
the evidence while conducting further research on the Alabama syphilis
study.
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Secret testing of Guatemalans may renew minorities' medical mistrust
By Ronda Racha Penrice
3:15 PM on 10/01/2010
 
News that the U.S. government willingly infected Guatemalans with
gonorrhea and syphilis without their permission from 1946 to 1948 gives new
credence to often dismissed claims by African-Americans and Latinos of
government-backed conspiracies to harm them. As ridiculous as many may find such
claims, unfortunately, history such as this supports their suspicions. It's
very hard not to recall the Tuskegee Syphilis Study, better known as the
Tuskegee Experiment.
 
>From 1932 to 1972, physicians from the U.S. Public Health Service
recruited 399 black men, the majority of them poor, from the Tuskegee, Alabama area
to purportedly provide them with medical care they could not afford.
Instead, the many men, who had syphilis, received little care. In fact, the U.S.
Public Health Service intended all along to do nothing. The study's
purpose was to observe the progression of syphilis, not to treat it. So, for 40
years, government-sanctioned medical professionals sat idly by as scores of
black men died from a curable disease.
 
Reporting on the story on July 26, 1972, the New York Times referred to
the Tuskegee Experiment as the "longest running non-therapeutic experiment on
human beings in medical history." Because of the Tuskegee Experiment, it
has been increasingly difficult for many medical professionals to recruit
African-Americans specifically for clinical trials that could help fight key
diseases and conditions that affect them.
 
In August, Doreen Gentzler from NBC's Washington D.C. affiliate helmed a
special report about the lack of African-American participants in clinical
trials. Noting that only one percent of current clinical trial participants
are African-American, in that report, Gentzler and Dr. Monica Swain, who
are both white, shared information that highlighted not just the paucity of
clinical trial participants but also cited the Tuskegee Syphilis Study as
one of the primary reason why.
 
Statistics cited in a 2009 report on racial differences related to
parental distrust of physicians and medical research by the University of
Pittsburgh's Dr. Kumaravel Rajakumar "found that 67 percent of African-Americans
distrusted the medical establishment compared with 50 percent of white
parents." And, interestingly, such distrust was found in all levels of the
African-American community, regardless of income.
 
This level of distrust is obviously not healthy for many reasons. Chief
among them is that it hinders the medical community's ability to effectively
combat diseases. African-Americans die of many diseases like breast cancer
and diabetes at higher rates and, in order to pinpoint why, medical
research is a necessary evil. But, as Somnath Saha, M.D., M.P.H., of the Portland
VA Medical Center in Portland, has noted, "If we want minority communities
to participate in our work, we must first fix the racial and ethnic
imbalance that continues to tilt our ivory towers."
 
Righting those towers with appropriate representation doesn't mean that
all will be right in the world. After all, the African-American nurse Eunice
Rivers was very much a part of the Tuskegee Experiment. In fact, many of
the participants probably participated because of Rivers's involvement so
it's deeper than having a few non-white faces. Instead there is a pressing
need for black and brown medical professionals who will not just execute
experiments that others have decided that are needed. There is a need for
medical professionals who will identify conditions and diseases that cannot be
ignored and then design ways in which they can be addressed.
 
The road to creating African-American trust in particular in medical
institutions, especially government-backed ones, will be hard. Even now, it is
not uncommon to hear African-Americans assert that HIV/AIDS is indeed a
man-made disease that was purposely put into the black community. While these
claims seem ridiculous to other Americans, African-Americans know of other
"ridiculous" situations that have turned out to be horrifically true.
 
With former President Bill Clinton issuing a formal apology from the
federal government for the Tuskegee Syphilis Study in 1997, not to mention the
congressional reforms introduced in the 1970s, along with Secretary of State
 Clinton standing up strongly today in the wake of this Guatemalan
discovery, Washington certainly has a new attitude. Consistent and caring outreach
from the government and the medical community as a whole will continue to
create goodwill and, in time, save more lives.
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