Public Anthropology’s Community Action Website Project Writing Assignment. Due on Friday 14:00 pm
OP-ED TOPIC FOR 2012 FALL
Introduction. . .
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Public Anthropology’s Community Action Website Project helps to provide students with key skills they need to be successful in their future careers: critical thinking, effective communication, and active citizenship. The Project encourages (1) critical thinking regarding an ethical issue, (2) a sharing of ideas among students from different universities, (3) improved writing skills, and (4) active citizenship – a sense that students working together can facilitate change.
Let’s begin. . .
The rules for regulating research are regularly updated. The U. S. Department of Health and Human Services, for example, is now in the process of completing a new set of regulations (see http://www.hhs.gov/ohrp/ ). After reading the material below, you will be asked to address in your Op-Ed (or opinion piece) two questions regarding how much, or how little, governmental regulation of research is appropriate.
There are four steps to this skill development process:
(1) READ: You should carefully read the background material to gain an idea of the issue you will be writing about. If you rush through the material, you will probably do poorly — grade wise — on this writing assignment.
(2) DECIDE: You will then take a stand on the issue discussed and, critically, develop an effective argument in support of your position.
(3) PREPARE: Before you write your Op-Ed (or opinion) piece, you should carefully look at the criteria others will use in evaluating your piece (see below) as well as examples of model Op-Eds from leading North American newspapers. These should provide a sense of how to frame and phrase your own Op-Ed.
(4) WRITE: You should write your Op-Ed in a word processing program – such as WORD – and cut and paste your Op-Ed into the space provided on the website.
In writing your Op-Ed, you are strongly encouraged to ONLY use the information provided below (especially the four case studies). Yes, there are lots of links in the following materials. But they are mainly provided so you appreciate the statements being made are well documented.
Writing your Op-Ed is primarily an exercise in critical thinking, not in collecting data from the web to support this or that position. Given the information as reliable as we can make it – given the demands of this assignment – what do you view as a reasonable stance? How do you reason with the information provided to a thoughtful position regarding freedom versus regulation in research?
A BIT OF HISTORY:
THE BELMONT REPORT (see http://www.hhs.gov/ohrp/policy/belmont.html, http://en.wikipedia.org/wiki/Belmont_report) of 1979 constitutes the foundation for regulating research across all parts of the United States government. Quoting from the report itself:
On July 12, 1974, the National Research Act (Pub. L. 93-348) was signed into law, there-by creating the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. One of the charges to the Commission was to identify the basic ethical principles that should underlie the conduct of biomedical and behavioral research involving human subjects and to develop guidelines which should be followed to assure that such research is conducted in accordance with those principles
The report emphasized three basic ethical principles:
1. “Respect for Persons. — Respect for persons incorporates at least two ethical convictions: first, that individuals should be treated as autonomous agents, and second, that persons with diminished autonomy are entitled to protection.”
2. “Beneficence. — Persons are treated in an ethical manner not only by respecting their decisions and protecting them from harm, but also by making efforts to secure their well-being. . . . Two general rules have been formulated as complementary expressions of beneficent actions . . .: (1) do not harm and (2) maximize possible benefits and minimize possible harms.
3. “Justice. — Who ought to receive the benefits of research and [who should] bear its burdens? . . . the exploitation of unwilling prisoners as research subjects in Nazi concentration camps was condemned as a particularly flagrant injustice. In this country, in the 1940’s, the Tuskegee syphilis study used disadvantaged, rural black men to study the untreated course of a disease that is by no means confined to that population. These subjects were deprived of demonstrably effective treatment in order not to interrupt the project, long after such treatment became generally available.
THE COMMON RULE “In 1991, 14 other Federal departments and agencies joined HHS in adopting a uniform set of rules for the protection of human subjects . . . This uniform set of regulations is the Federal Policy for the Protection of Human Subjects, informally known as the ‘Common Rule’.” To insure these regulations are followed the Department or Health, Education, and Welfare, now Department of Health and Human Services, established the Office for Human Research Protections (OHRP) (see
INSTITUTIONAL REVIEW BROADS (IRBs): “The Office of Human Research Protections [OHRP] supervises the Institutional Review Boards charged with following the common rule.” Initially, IRBs only covered federally funded research. But over time, universities extended the jurisdiction of their IRBs to cover all faculty research (whether or not it was funded by the government). “The IRB has the authority to approve, require modifications in, or disapprove all research activities that fall within its jurisdiction as specified by both the federal regulations and local institutional policy.” (http://www.hhs.gov/ohrp/archive/irb/irb_chapter1.htm).
According to the Code of Federal Regulations §46.111, the Criteria for IRB approval of research states http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html#46.111 ). “In order to approve research . . . the IRB shall determine that all of the following requirements are satisfied:
(1) Risks to subjects are minimized: . . .
(2) Risks to subjects are reasonable in relation to anticipated benefits. . .
(3) Selection of subjects is equitable
[“in a clinical investigation of a new drug intended for general use, the researcher should recruit a more or less representative sample of the population” , http://flpublichealthethics.net/index.php/eng/help_for_committee_members_and_staff/is_selection_of_subjects_equitable ]
[“The selection process needs to be scrutinized in order to determine whether some classes (e.g. welfare patients. . .) are being systematically selected simply because of their easy availability, their compromised position, or their manipulability, rather than for reasons directly related to the problem being studied” http://research.uthscsa.edu/irb/selection.shtml )
(4) Informed consent will be sought from each prospective subject
[Informed consent involves gaining the research subject’s permission to conduct research involving that subject. “The principle of respect for persons demands that subjects’ decisions whether to become involved in research must be voluntary and informed” http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html#46.116]
(5) Informed consent will be appropriately documented . . .
(6) When appropriate, the research plan makes adequate provision for monitoring the data collected to ensure the safety of subjects.
(7) When appropriate, there are adequate provisions to protect the privacy of subjects and to maintain the confidentiality of data.
THE CANADIAN RESEARCH ETHICS BOARD’S (REB’S) regulations were updated in 2010. The policy statement affirms: “Respect for human dignity has been an underlying value of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans . . . since its inception. “ It continues “Respect for human dignity requires that research involving humans be conducted in a manner that is sensitive to the inherent worth of all human beings and the respect and consideration that theyare due.
In this Policy, respect for human dignity is expressed through three core principles – Respect for Persons, Concern for Welfare, and Justice.”It continues “Respect for Persons recognizes the intrinsic value of human beings and the respect and consideration that they are due. . . . An important mechanism for respecting participants’ autonomy in research is the requirement to seek their free, informed and ongoing consent. This requirement reflects the commitment that participation in research . . . should be a matter of choice and that, to be meaningful, the choice must be informed. An informed choice is one that is based on as complete an understanding as is reasonably possible of the purpose of the research, what it entails, and its foreseeable risks and potential benefits, both to the participant and to others. . . . Concern for Welfare means that researchers and REBs should aim to protect the welfare of participants, and, in some circumstances, to promote that welfare in view of any foreseeable risks associated with the research. . . . Justice refers to the obligation to treat people fairly and equitably. Fairness entails treating all people with equal respect and concern” (Tri-Council Policy Statement “Ethical Conduct for Research Involving Humans” (http://www.pre.ethics.gc.ca/pdf/eng/tcps2/TCPS_2_FINAL_Web.pdf ).
REASONING WITH FOUR KEY CASES
Rather than overwhelming you with piles of information, you are being asked to think carefully about the following four case studies. Two focus on the need to 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 four case studies and come to your own reasoned conclusion.
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.
The experiments were funded by a grant from the National Institutes of Health to the Pan American Sanitary Bureau and involved multiple Guatemalan government ministries. A total of about 1500 study subjects were involved although the findings were never published.
Information about these experiments was uncovered by Professor Susan Mokotoff Reverby of Wellesley College. Reverby found the documents in 2005 while researching the Tuskegee syphilis study, in Cutler’s archived papers, and shared her findings with United States government officials.
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.
The study appears to have ended in 1948, partly because of medical “gossip” about the work, and partly because penicillin was costly and in short supply during the war. Although some follow-up laboratory testing and patient observation continued until the early 1950s.
Additionally, similar research was also conducted on the transmission and prophylaxis of gonorrhea and chancroid. The subjects for all of the STD experiments consisted of female sex workers, prisoners, soldiers, and mental hospital patients; the Centers for Disease Control and Prevention acknowledges that “the design and conduct of the studies was unethical in many respects, including deliberate exposure of subjects to known serious health threats, lack of knowledge of and consent for experimental procedures by study subjects, and the use of highly vulnerable populations.”
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. In a joint statement, Hillary Clinton and Kathleen Sebelius said:
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. The conduct exhibited during the study does not represent the values of the US, or our commitment to human dignity and great respect for the people of Guatemala.
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.”
Human rights activists have called for subjects’ families to be compensated.
CASE TWO: STUDYING OLD BONES — PRESERVATION OR PERVERSION?
October 09, 2011
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.
“ It’s a feeling of loss — and I get angry a little bit too because (remains) have no business being in universities or museums,” says retired translator Heather Bastien of Wendake, Que., whose prehistoric ancestors first hunted, fished and farmed in southern Ontario 15,000 years ago.
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 — as has happened around the GTA — the nation must be notified immediately.
Bastien says a long-held belief in Ontario that Huron-Wendat were “extinct” — the group migrated to Quebec 350 years ago — has meant few tried vigorously to find them after their graves were unearthed.
That may have happened 21 years ago.
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.
McKillop, described as a Canadian/American academic who studied at Trent University, has overseen student research on the ossuary remains until at least last year.
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. In typical ancestral Huron practice, many skeletons were de-fleshed and dismembered post-mortem. The measurement and comparison of cut marks on severed bones were among the studies conducted by McKillop’s graduate students.
When the ossuary was discovered by building contractors in 1990, it appears provincial law for investigating an unmarked gravesite was followed.
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 letter states “this removal and subsequent experimentation was done without consultation with the Huron-Wendat First Nation” and there is no agreement between the school and the nation to “perform these unethical experiments.”
In an interview, Donnelly called the Ontario Cemeteries Act “antiquated and racist.”
“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.
“ It is a special ceremony to quiet their souls,’’ Bastien says. “They’ve been roaming around for so long with no place to stay.”
The Feast of the Dead
Ancient Huron-Wendat ossuaries can contain the remains of hundreds who were honoured by the Feast of the Dead, a socially and spiritually important celebration held every 10 to 12 years.
Bones of those who died over that period were removed from raised wooden structures where they were originally laid to rest and prepared for burial. Dried flesh was stripped from the bones and burned, with skeletons disarticulated (severed at joints) and placed on beaver pelts. The ritual also signalled a village was packing up to move to another area.
French Jesuit priest Jean de Brébeuf, who lived and worked among the Huron-Wendat in the 17th century, wrote a detailed, eyewitness account about the Feast of the Dead in 1636.
“ The decision having been made, as all the bodies are to be transported to the Village where is the common grave, each family sees to its dead but with a care and affection that cannot be described,’’ wrote de Brébeuf, in part, according to Martyrs’ Shrine archivist Steve Catlin.
“ If they have dead relatives in any part of the Country, they spare no trouble to go for them; they take them from the Cemeteries, bear them on their shoulders and cover them with the finest robes they have.”
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 YANOMAMI – WHEN GOOD INTENTIONS ARE NOT ENOUGH
SOURCE: Robert Borofsky (drawn from Yanomami: The Fierce Controversy and What We Can Learn From It and references cited below)
The Yanomami are perhaps the best-known Amazonian Indian group in the world. They are often portrayed in books and films, not necessarily correctly, as one of the world’s last remaining prototypically primitive groups.
James Neel, perceived by some as the father of modern human genetics, began his research among the Yanomami in 1966. One may infer from his actions and writings that he felt research among the Yanomami – specifically collecting their blood samples for analysis – involved also providing them something in return for their assistance. When Neel learned the Yanomami were susceptible to measles, for example, he brought over 2,000 doses of the Edmonson B vaccine (that he obtained at minimal cost from the Center for Disease Control) to vaccinate the group against a potential deadly measles epidemic. Half of this supply he gave to the Venezuelan government to distribute. (What happened to that vaccine is not known.) He planned to hand the rest over to missionaries for an inoculation campaign. But when a measles epidemic unexpectedly broke out, he scrapped this plan and began a vaccination campaign himself to minimize the epidemics’ impact. He was only partially successful. He inoculated many Yanomami. A number, however, had adverse reactions to the vaccine because he failed to include immune gamma globulin (MIG). (He had given much of his gamma globulin to the Venezuelan authorities.) Regretfully, a number of Yanomami died.
Some praised Neel’s attempt to save Yanomami lives. Others have suggested that he helped spread the epidemic through his research or at least aggravated the problem by using the Edmonson B vaccine, without immune gamma globulin. If he had purchased a more expensive measles vaccine, the Yanomami would have had fewer adverse reactions. Today, the Yanomami rarely mention Neel’s assistance.
What is clear is that the Yanomami were barely consulted regarding Neel’s research. Neel decided to do his research without first gaining Yanomami permission. And he decided, on his own, what the reciprocal benefits of his research would be.
The Yanomami were promised that Neel’s blood samples would be analyzed to discover information helpful in fighting Yanomami diseases. That promise was never kept. Moreover, Napoleon Chagnon – the anthropologist who was central to Neel’s research – apparently never informed the Yanomami that the blood samples would be stored for years in research refrigerators in the United States rather destroyed soon after the research was over. Yanomami believe that all parts of a deceased Yanomami must be ritually disposed of so the deceased can spiritually leave this world. Forcing the deceased to spiritually remain in this world – as would occur by storing their blood in research refrigerators – could cause the deceased to turn on the living and bring them harm.
In his own anthropological research, Chagnon provided informants with a host of valued items—such as machetes, pots and even guns for hunting. Chagnon speaks movingly of his time with the Yanomami.
By repetitively returning and becoming more and more intimately associated with people like Kaobawä and Rerebawä [two of his informants], I became “involved” in their culture and now want to make sure that they and their children are given a fair shake in the inevitable changes that are occurring. I can do so only by becoming, as they say, involved—by becoming more active and becoming an advocate of their rights and their chances to have a decent future, one that does not condemn them to becoming inferior members of the lowest possible rung of the socioeconomic ladder (Borofsky 2005:27; Chagnon 1992:244-46).
Yet it is also true that during his research, Chagnon broke the American Anthropological Association’s Code of Ethics. Quoting from the Association’s El Dorado Task Force Report, in respect to the allegations it investigated against Changon: “first, allegations that his representations of Yanomami ways of life were damaging to them and that he made insufficient effort to undo this damage, and second that his association in the early 1990’s with FUNDAFACI, a Venezuelan foundation that sponsored his research, represented an unethical prioritizing of his own research concerns over the well-being of the Yanomami. We concur with both these allegations” (Borofsky 2005:308; American Anthropological Association 2002, I:31). The first violated the anthropological injunction against do no harm. The second violated Venezuelan law and led to Chagnon’s deportation from Venezuela.
Beyond doubt, both Neel and Chagnon wanted to provide the Yanomami with reciprocal benefits for the assistance the Yanomami provided them. Both clearly wanted to do well by the group. But in both cases, helping the Yanomami often involved the researchers specifying the requests as well as the benefits for assisting in their research. The Yanomami were not active negotiators in this process. There was no informed consent. They were lied to in respect to receiving back medical information from the blood samples to help in fighting Yanomami diseases. It also seems they were misled regarding the fate of the blood samples. Certainly when the Yanomami discovered that these blood samples were being stored in research refrigerators, there was an uproar that continues today. The Yanomami have vociferously campaigned for the return of these samples.
The result is that Chagnon and, to a lesser degree, Neel are now held up as examples of how NOT to conduct field research. The Yanomami feel taken advantage of by both researchers. The Yanomami clearly benefited from both individuals’ research. But they benefited in ways they did not always appreciate at the time and they vociferously criticize today. Both researchers are depicted in less than positive terms, sometimes vehemently so, by the Yanomami.
American Anthropological Association
2002 El Dorado Task Force Final Report. 2 vols. and preface. Electronic document, (originally http://www.aaanet.org/edtf/index.htm but now dropped from the AAA website).
Borofsky, Robert et al.
2005 Yanomami: The Fierce Controversy and What We Can Learn From It. Berkeley: University of California Press.
1992 Yanomamö. Fourth Edition. Fort Worth: Harcourt Brace College Publishers.
CASE FOUR: REVIEW BOARDS FORCE SEX RESEARCH INTO THE CLOSET, SURVEY SUGGESTS
SOURCE: The Chronicle of Higher Education
June 28, 2012
By Dan Berrett (http://chronicle.com/article/Review-Boards-Force-Sex/132691/)
The expanding reach of institutional review boards, which has frustrated historians and social scientists, has also stymied research about sexuality, says a professor in the latest issue of Contexts, a magazine published by the American Sociological Association.
“The sexuality angle of this research complicated IRB deliberations in particular ways, and that’s because of the culture of stigma in general around sexuality,” Janice M. Irvine, author of the article, “Can’t Ask, Can’t Tell,” said in an interview.
Ms. Irvine, a professor of sociology at the University of Massachusetts at Amherst, whose past research has focused on battles over sex education, said she conducted a survey of her fellow sociologists who study sexuality to see whether data supported or contradicted what she had often heard anecdotally.
Had the broader culture’s increasingly tolerant attitudes about sex made it easier for scholars to conduct research on the subject? Or was their work still marginalized and considered controversial?
Her research into these larger questions found that frustrations with institutional review boards were so overwhelming that they merited their own paper, she said. “They just poured out on the page.”
Ms. Irvine canvassed members of the sociology association’s committee on sexuality, 155 of whom said they had conducted research. Of those academics, 119 said they had submitted sexuality-related projects to their institutional review boards. Fifty-two of them, or 44 percent, reported that their work had been slowed down or discouraged by the review board.
While she said it was important to remember that more than half of the respondents had no difficulty, the large number who did is a clear problem, one that limits the production of new knowledge. “To say that about half of the people in an area encountered problems is pretty significant and needs to be looked at,” Ms. Irvine said.
Institutional review boards, which were originally intended to protect human subjects of medical research, have become fixtures in the academic bureaucracy. Since the late 1990s, increased federal oversight has prompted the boards to weigh in with greater frequency on proposed research projects in the humanities and the social sciences, a trend that has alarmed scholars in those disciplines. Historians in particular have chafed at how review boards have affected their ability to conduct oral histories.
Those regulations are under review by the U.S. Department of Health and Human Services, which hopes to accommodate distinctions between medical research and the other disciplines while maintaining the protection of human subjects.
The sociologist Jack Katz, of the University of California at Los Angeles, has argued that review boards have effectively censored research on hot-button issues. The pattern of their decisions displays “a colorful national quilt of parochialism, diverse and frequently petty in the interests served, almost charming in the honoring of America’s rich intolerances, regionally varying partisan biases, and wild fears,” he wrote in 2007.
Fears and assumptions about research on sexual topics emerged as a common theme in Ms. Irvine’s survey. She describes the frustrations of Elisabeth Sheff, an assistant professor of sociology at Georgia State University, who proposed a study of people who identify as kinky. Ms. Sheff said in the article that review-board approval “took just a hideously long time.”
Out of concern for her safety, the review board prohibited her from visiting respondents in their homes, which she says interfered with her ability to recruit subjects and conduct interviews. She wound up meeting them in her office, a public library, or at cafes.
“These people, who knew what they would do? If they were going to engage in kinky sex, maybe they would kidnap and torture me,” she said in the article, describing the premise of some on her review board. “And I was like, ‘It doesn’t really work that way.'” Georgia State declined to comment.
In another case, a proposal from one of Ms. Irvine’s graduate students to study gay servicemen under the military’s “don’t ask, don’t tell” policy was rejected. It was blocked, she said, out of a misguided concern for the subjects.
“I imagine they may see themselves as defenders of gay servicemen when, in my way of thinking, they were silencing them,” Ms. Irvine said.
People do not need to be protected from talking about sex, she argued, even when it involves groups thought to be vulnerable.
In a study of 181 lesbian, gay, bisexual, and transgender adolescents that was conducted by Brian Mustanski of Northwestern University, 89 percent reported being very comfortable or comfortable answering questions about their sexual behavior. And in a study published last month in Psychological Science, researchers at the University of New Mexico found that college students completing a survey about trauma and sex faced minimal risk of harm or discomfort relative to what they would encounter in daily life or through routine physical or psychological examinations. (A description of the study can be read here.)
It is not clear whether the pending revisions to the federal regulations for review boards will make research on sexuality any less thorny. The most recent draft of the regulations proposed exempting from review any research that poses a minimal risk to the subjects—as long as the topic is not “emotionally charged.”
Ms. Irvine is not sure how such a determination would be made. For now, her goal is to draw attention to a larger notion: that the members of institutional review boards can never be completely objective, because they are shaped by cultural forces.
“We need ethical review and ethical research,” she said. “But as long as we have these kinds of boards that review every proposal, it’s going to be challenging to make significant changes.”
The assignment . . .
Please note, this assignment is more than simply an exercise in critical thinking. It is also 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 four 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.
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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