THE GUATEMALA SYPHILIS EXPERIMENT
CASE ONE: THE GUATEMALA SYPHILIS EXPERIMENT
SOURCE: Wikipedia, the free encyclopedia
The syphilis experiments in Guatemala were United States-led human experiments conducted in Guatemala from 1946 to 1948, during the administration of President Truman and President Juan José Arévalo with the cooperation of some Guatemalan health ministries and officials. Doctors infected soldiers, prostitutes, prisoners and mental patients with syphilis and other sexually transmitted diseases, without the informed consent of the subjects, and treated most subjects with antibiotics. This resulted in at least 83 deaths. In October 2010, the U.S. formally apologized to Guatemala for conducting these experiments.
The experiments were led by United States Public Health Service physician John Charles Cutler, who later took part in the late stages of the Tuskegee syphilis experiment. In archived documents, Dr. Thomas Parran, Jr., the U.S. Surgeon General at the time of the experiments, acknowledged that the Guatemalan work could not be done domestically, and details were hidden from Guatemalan officials. . . . A total of about 1500 study subjects were involved although the findings were never published. . . .
While the Tuskegee experiment followed the natural progression of syphilis in those already infected, in Guatemala doctors deliberately infected healthy people with the diseases some of which are fatal if untreated. The goal of the study seems to have been to determine the effect of penicillin in the prevention and treatment of venereal diseases. The researchers paid prostitutes infected with syphilis to have sex with prisoners and some subjects were infected by directly inoculating them with the bacterium. When the subjects contracted the disease they were given antibiotics, although adequate penicillin therapy was prescribed for 76% of subjects, completion of therapy was documented for only 26%. Francis Collins, the current Director of National Institutes of Health, called the experiments “a dark chapter in history of medicine” and commented that modern rules absolutely prohibit conducting human subject research without informed consent. . . .
Apology and Response
In October 2010, the U.S. government formally apologized and announced that there was no statute of limitations for the violation of human rights in that medical research. . . . President Barack Obama apologized to President Álvaro Colom, who had called these experiments “a crime against humanity”.
“It is clear from the language of the report that the U.S. researchers understood the profoundly unethical nature of the study. In fact the Guatemalan syphilis study was being carried out just as the “Doctors’ Trial” was unfolding at Nuremberg (December 1946 – August 1947), when 23 German physicians stood trial for participating in Nazi programs to euthanize or medically experiment on concentration camp prisoners.”
The U.S. government asked the Institute of Medicine to conduct a review of these experiments. Separately, the Presidential Commission for the Study of Bioethical Issues was asked to convene a panel of international experts to review the current state of medical research on humans around the world and ensure that such incidents cannot be repeated. The Commission report, Ethically Impossible: STD Research in Guatemala from 1946 to 1948, published in September 2011, concluded that “the Guatemala experiments involved unconscionable basic violations of ethics, even as judged against the researchers’ own recognition of the requirements of the medical ethics of the day.”
CASE TWO: STUDYING OLD BONES — PRESERVATION OR PERVERSION?
SOURCE: TheStar.com, October 09, 2011
by Mary Ormsby
A cross-border battle is brewing over 500-year-old bones belonging to some of Ontario’s original inhabitants — a case descendents describe as academic grave robbing.
The Huron-Wendat Nation is demanding that Louisiana State University return the “stolen” remains of about 200 people. They say researchers improperly gathered the bones from an Ontario ossuary to use for unauthorized student research. . . .
The unusual dispute raises questions about the best way for academics to be culturally sensitive — particularly when studying human remains — in a CSI generation that considers bones a DNA treasure trove of clues to scientific, historic, medical and, sometimes, criminal puzzles.
Bastien, 79, is a Wendake Council representative who has been active in asserting Huron-Wendat rights in Ontario. Some of those rights, outlined in a series of Supreme Court of Canada decisions, mean First Nations people must be consulted before development begins in historic areas that might reveal burial grounds. If Huron-Wendat burial ossuaries (mass bone repositories) are accidentally disturbed . . . the nation must be notified immediately. . . .
Archaeologist Heather McKillop is the LSU professor who oversaw the excavation and eventual export of bones from the Poole-Rose ossuary near Cobourg to Baton Rouge, La., where she teaches. She was given permission to do so by the native community geographically closest to the ossuary, the Alderville First Nation, which is not Huron-Wendat.
McKillop could not be reached by the Star despite several attempts over the past two weeks and a spokesperson for LSU said the school would not be able to comment. However, McKillop and co-author Lawrence Jackson described the Poole-Rose ossuary as fitting the Huron’s centuries-old Feast of the Dead burial-pit pattern in their 1991 report in the Ontario Archeological Society’s newsletter. . . .
It’s not uncommon for universities and museums to have old bones.
The University of Toronto, for instance, has thousands of First Nations bones, most of which are Huron-Wendat, from archeological digs from the 1940s through the 1970s. Several years of repatriation negotiations are nearing a conclusion but details are confidential, according to a university spokesperson.
Helen Robbins, a social anthropologist and repatriation director at the Chicago Field Museum, said a scientific middle ground might be reached more often if academics and indigenous people were more “open and honest” with each other.
“ There can be benefits with indigenous people getting more access to museums, learning about museums as well as museums learning more about the tribe they have the human remains of — and may have been sitting there for 100 years,’’ says Robbins, who has no connection to the Huron-Wendat /LSU matter.
Prior to European contact, the Huron-Wendat population swelled to about 40,000. They lived in an area from the southern horn of Georgian Bay to the northerly shore of Lake Ontario, and from west of Toronto to Cornwall and Prescott in the east.
Diseases brought by white settlers, including smallpox, devastated the once-mighty confederacy in the 17th century. A group of native survivors eventually migrated to Quebec in the mid-1600s, in part to escape conflict with other nations.
Today, Bastien said there are 3,000 Huron-Wendat in Canada and about 6,000 in the United States.
The Poole-Rose ossuary was carbon dated to about 1550. . . . For remains deemed very old and aboriginal, there are two choices under the Ontario Cemeteries Act: One is to contact the closest First Nations group, which in this case was the Alderville First Nation. The second option is to consult with the most likely people descended from the dead.
Alderville’s then-chief Nora Bothwell and her council gave McKillop permission to excavate, export and study the remains. Bothwell told the Star the bones were expected to be repatriated and that she hadn’t initially known the skeletons were Huron-Wendat.
But McKillop “was likely aware at that time, or ought to have been aware, that the skeletons were ancestral Huron-Wendat,” claims a Sept. 16 letter sent to McKillop, LSU chancellor Michael Martin and provincial Tourism and Culture Minister Michael Chan. It was sent by Toronto lawyer David Donnelly, who represents the Quebec-based nation. . . .
“The fact is that for sensitive cultural heritage matters, the Ontario Cemeteries Act still treats aboriginal nations as being all alike. A statute that literally says talking to the closest Indian will do is despicable and illegal.”
Bastien hopes LSU officials will deliver the ancestral bones to Canada so they — and restless Huron souls — can be “returned to the earth” with a calming traditional ritual. A smudging ceremony with tobacco and sage will be performed by elders. Remains are then interred with beaver pelts, artifacts and “the three sisters” — corn, beans and squash. . . .
The Huron-Wendat believe buried bones are sacred because a person’s soul rests with the remains, while a second soul soars skyward.
CASE THREE: THE IRB AND THE FUTURE OF FIELDWORK
SOURCE: Chronicle Of Higher Education, August 12, 2011
by Laurie Essig
Institutional Review Boards exist, according to their websites, to protect research subjects from unethical researchers, the kind of researchers who would recreate prison situations to see how nasty humans could be to total strangers or would tell their subjects that they had to administer electric shocks to a stranger with heart disease just to see if they’d do it. . . .
But as any field researcher—that is, the kind of researcher who actually speaks with people (as opposed to experiments on them)—will tell you, IRBs have effectively shut down our ability to actually find out about people’s lived experiences. IRBs have treated speaking with someone as equivalent to experimenting on them and have almost killed fieldwork in the process.
A friend, who used to interview prisoners, gave it up since prisoners are “vulnerable populations” and getting IRB approval is far more difficult than getting through the prison doors. Another acquaintance who used to research sexuality among young people has had to give it up since if there’s one thing you canNOT speak with people under 18 about it’s sex. I myself have had a few run-ins with IRBs. One time I was called in because I had interviewed people who identified as transgendered and did not treat these people as a “vulnerable population,” which includes prisoners, terminally ill persons, children, people with mental illness, and pregnant women. . . .
“These people have issues with their gender,” she yelled.
When I suggested that from a sociological perspective, we all have issues with our gender, even the most normatively gendered among us, she told me I could come up with a plan for dealing with “those people’s mental illness” or forget my project.
A year later, at a different institution, I was told that I had to get cosmetic surgery patients to sign permission slips to speak with me even though the interviews would be anonymous and details would be changed in such a way as to protect everyone’s identity. You can imagine what this was like.
“Hi, may I ask you intimate questions about what you hate about your body, what heroic medical interventions you will undergo, and how you’ll finance it?”
“Um, sure, I guess.”
“Can you sign this legalistic looking form with your real name even though I just promised you that I will never use it?”
People love it when you offer them anonymity and then ask for a signature. Really makes them want to open up to you. But as annoying as this sort of bureaucratic bookkeeping is, and as frustrating as it is to realize that it’s probably more about making sure the university isn’t sued than protecting those people who are kind enough to speak with field researchers, it is even more upsetting that biomedical and psychiatric paradigms are forced onto those of us who come from fields, like sociology, that are fundamentally at odds with such paradigms.
As a sociologist, the last thing I want to do is decide who is mentally ill and who is mentally healthy. The sociological questions are far more likely to be “How do cultures determine who is and is not mentally ill?” and “What forms of power lie behind those determinations?”s
CASE FOUR: BEHIND CLOSED DOORS
SOURCE: INSIDE HIGHER EDUCATION, February 8, 2012
By Mitch Smith
Many researchers level complaints against institutional review boards (IRBs), which can delay or derail projects their members deem unethical, unrealistic or illegal. Seeking to understand how the boards work . . . Laura Stark, sat through hours of deliberations at boards across the country. Behind Closed Doors: IRBs and the Making of Ethical Research, published this year by the University of Chicago Press, explains through observation and interviews how and why IRBs function the way they do. Stark agreed to answer a few questions from Inside Higher Ed. . . .
Q: You mention that something as simple as spelling errors – one applicant’s incorrect use of “principal” drew the ire of an IRB member – can speak to the competency of the researcher and play a role in a project’s approval or denial. Is that fair?
A: I think the real question is whether “fairness” should be the most important criteria that committees use in evaluating applications — whether for grant funding, college admissions, or IRB approval. It would seem that fairness is not the only criteria used in IRB evaluations. In focusing on written errors, board members are looking for signs that researchers are trustworthy, careful people who aren’t going to make a mistake in their studies (e.g., giving incorrect dosages or passing too much responsibility to students). As I argue in the book, the seemingly disproportionate concern over typos and written mistakes in applications is not a matter of fairness, but of trustworthiness. Is that a criterion worth considering? If so, is attention to detail in written documents a good way to evaluate trustworthiness? For that matter, should researchers be evaluated at all, or simply the studies being proposed? These are questions for the scientific and scholarly community to answer.
Q: Your hypothetical proposal in which companies would be tested on whether they screen ex-convicts based on race received “very different” responses from each of the 18 IRBs that reviewed it. Is some level of inconsistency inevitable between IRBs and to what degree is it acceptable?
A: This finding goes to show the many ways in which IRB administrators and members can interpret the rules. In Chapter Two I explore Devah Pager’s experiences in getting approval at several IRBs for her excellent work on employment discrimination. Pager’s account illustrates that when IRB members read new protocols, they conjure their local institutional history and use case-based reasoning to make decisions.
The main aims of the book are to document how our everyday experience of the law is simply a product of how people enact the law and, specifically, how people with the power to apply rules that affect science and scholarship are, in effect, shaping what we can know and say for both good and ill — whether we are considering IRBs or film censorship boards.
CASE FIVE: 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.”
The first experiment began on 300 Norway House Cree. Of that group, 125 were selected to receive vitamin supplements, which were withheld from the rest. At the time, researchers calculated the local people were living on less than 1,500 calories a day. Normal, healthy adults generally require at least 2,000.
“ The research team was well aware that these vitamin supplements only addressed a small part of the problem,” Mosby writes. “The experiment seems to have been driven, at least in part, by the nutrition experts’ desire to test their theories on a ready-made ‘laboratory’ populated with already malnourished human experimental subjects.”
The research spread. In 1947, plans were developed for research on about 1,000 hungry aboriginal children in six residential schools in Port Alberni, Kenora, Ont., Schubenacadie, N.S., and Lethbridge, Alta.
At one school, children were divided into one group that received vitamin, iron and iodine supplements and one that didn’t. Another school depressed levels of vitamin B1 to create another baseline before levels were boosted. A special enriched flour that couldn’t legally be sold elsewhere in Canada under food adulteration laws was fed to children at another school.
And, so that all the results could be properly measured, one school was allowed none of those supplements.
Many dental services were withdrawn from participating schools during that time. Gum health was an important measuring tool for scientists and they didn’t want treatments on children’s teeth distorting results.
The experiments, repugnant today, would probably have been considered ethically dubious even at the time, said Mosby.
“ I think they really did think they were helping people. Whether they thought they were helping the people that were actually involved in the studies, that’s a different question.” . . . .
Little has been written about the nutritional experiments. A May 2000 article in the Anglican Journal about some of them was the only reference Mosby could find.
Not much was learned from those hungry little bodies. A few papers were published — “they were not very helpful,” Mosby said — and he couldn’t find evidence that the Norway House research program was completed.
The assignment . . .
This is an exercise in civic engagement and active citizenship. You are to set out how you think research should be regulated in the United States and Canada and then, if you wish, you can forward your perspective to others..
You should address the following questions in writing your Op-Ed:
Based on the information presented above in the five case studies, you are to voice your view on how Institutional Review Boards (in the U.S.) and/or Review Ethics Boards (in Canada) should enforce a set of common rules regarding research. How much freedom should researchers be allowed in conducting their research? What regulations should be enforced to prevent the abuse of research subjects and ensure, more generally, that the research strives to promote positive benefits for the larger society sponsoring it?
Please remember, it is strongly preferred that you focus on the above information and only the above information in writing your Op-Ed. The emphasis is not on citing a host of additional sources. Rather it is on thinking critically about the information presented here. Also, offering a host of references at the end of your essay, common in academic writing, is rare in Op-Eds. You need not reference any and all sources. You should use quote marks, for example, to indicate when you directly quote a section (or sections) of this assignment. But you need not include the reference itself since the source is self-evident.You should only use references for direct quotes from sources outside this assignment.
Guidelines for writing your Op-Ed (or opinion piece).
These are standards that will be used to evaluate it.
EXAMPLES OF TWO WINNING OP-EDS WRITTEN BY STUDENTS
Taking a Position: Does the opinion piece take a position that is clearly expressed? The position may be a recommendation for action or it may be to alert readers to a problem. The author should make a single point well. You, as the reader, should be able to explain the author’s message in a sentence or two. If a student fails to address the specified topic– that is, deals with another topic entirely — you should evaluate his or her Op-Ed with a 1-3 score for this criterion.
6-7: The opinion piece has an original, well-argued position. The piece draws the reader into looking at the topic in a new way or with new insight. The reader can readily summarize what the author is saying and why.
4-5: The opinion piece takes a thoughtful position. But the supporting data appear a bit muddled. Readers are left with questions: Why did the author take this position? Why take this position rather than an alternative one?
2-3: The piece leaves readers confused as to what point the author is trying to make. The reader cannot readily summarize the author’s key point or the data supporting the position seem not to really support it.
1: The paper lacks an identifiable point. Readers are left confused as to what point the author is making and why.
Persuasive: Does the piece persuade the reader? A good piece argues effectively for a particular position. Even though the reader may not ultimately agree with the author, the reader comes away from the piece willing to seriously consider the author’s perspective. If a student fails to address the specified topic– that is, deals with another topic entirely — you should evaluate his or her Op-Ed with a 1-3 score for this criterion.
6-7: A reader comes away from reading the piece feeling the author has effectively argued for a certain position. The author uses concrete examples that resonate with readers.
4-5: The opinion piece highlights an important topic. But it does not really convince readers as to the value of the author’s position.
2-3: The opinion piece seems mostly a personal venting. The author is not reaching out to readers or trying to connect with them in a meaningful way.
1: The piece is unconvincing. An unbiased reader, reading this piece, would not find the piece very persuasive.
Hook and Structure: Does the opinion piece engage the reader right at the beginning? Is there evidence of thoughtful organization? Does the author summarize the main point at the end?
6-7: The main point is effectively stated in the first few sentences. These first few sentences capture the reader’s attention and draw the reader into reading further. The author effectively summarizes the piece’s argument in a strong final paragraph.
4-5: Readers are not immediately drawn into the argument. But they are not put off by it either. They find the piece reasonable but a little slow moving. It does not hold the reader’s attention. The final paragraph does not offer a powerful restatement of the author’s position.
2-3: The piece makes a basic point. But it does not catch your attention. It does not draw you in at the beginning nor does it summarize its message at the end.
1: The author never draws the reader into the opinion piece. It is not clear what the author is saying nor why it is important.
Writing and Clarity: Is the piece readily understandable by non-academic readers? General readers should find the piece easy and interesting to read. There should be few grammatical and spelling errors.
6-7: The writing is clear. The author’s own voice and perspective come through in a convincing way. You can identify with the author and the position she or he takes. There are no grammatical mistakes that distract from the author’s argument.
4-5: The writing is reasonable. The sentences and paragraphs are a bit too long or the passive voice is emphasized. There is a bit too much jargon.
2-3: The author tends to go on too long. It is not really clear what point she or he is making. The author has long sentences and paragraphs.
1: A reader is left confused as to what point the author is trying to make.
Tone: Is the opinion piece polite and respectful? The focus is on persuading the reader rather than voicing indignation or condemnation.
6-7: The opinion piece is polite and respectful in tone. Rather than dismissing the other side, it acknowledges its value while disagreeing with it. It comes across as written by a thoughtful professional versed in the subject being discussed.
4-5: There is generally a polite tone. But the author does not acknowledge that reasonable people might disagree regarding the point being made. The author asserts there is one reasonable position and she or he is presenting it.
2-3: The piece comes across as quite opinionated. It appears the author is “venting” about something that bothers her or him.
1: The piece is similar to a political “attack” ad. The author is pouring at rage with little concern for who is reading the piece.
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