THE TOPIC OF YOUR OP-ED
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?
OP-ED TOPIC FOR 2013 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. . .
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THE ISSUE
The rules for regulating
research are regularly updated. The U. S. Department of Health and Human
Services, for example, is presently trying to complete a new set of regulations (see e.g. http://chronicle.com/article/Overhaul-of-Rules-for-Human/137811/). 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.
Good luck.
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.
RELATION TO READING: Why a Public Anthropology?
Why a Public Anthropology? begins with the sentence:
"Cultural Anthropology has the potential to change the world." The
first chapter highlights three anthropologists who actively addressed important
social concerns -- Franz Boas, Margaret Mead, and Paul Farmer. The second
chapter then describes in some detail cultural anthropology's potential for
addressing a range of problems. But how does one proceed in an ethically
positive way in addressing these problems, in trying to bring change?
In sections 1.6, 1.7, and 1.8, the book asks whether cultural
anthropology should move beyond its current ethical stance of "do no
harm" to a more positive stance of "doing good." These sections
emphasize that "do no harm," when looked at closely, is an ethically
ambiguous position. There are several cases where anthropologists, while in
principle not desiring to do harm, in fact do considerable harm. And there are
cases where national governments, in seeking to avoid ethical abuses,
over-regulate research. In strictly regulating research, these governments
limit the researcher's ability to do good, thereby causing harm in a different
way.
In this assignment, you need to consider how research should best
proceed for the good of all. How much regulation should there be to avoid
harming research subjects? And how much freedom should there be so that researchers
can produce results that help others?
BACKGROUND INFORMATION
In writing your Op-Ed, you are strongly encouraged to ONLY use the
information provided below (especially the five 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?
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A BIT OF HISTORY:
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.
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
http://www.hhs.gov/ohrp/humansubjects/commonrule/index.html
http://ori.hhs.gov/education/products/ucla/chapter2/page04b.htm ).
http://www.hhs.gov/ohrp/humansubjects/commonrule/index.html
http://ori.hhs.gov/education/products/ucla/chapter2/page04b.htm ).
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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).
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 stateshttp://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 )
[“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 FIVE KEY CASES
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 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 five 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.
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
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.
“ 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.
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. . . .
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
(http://chronicle.com/blogs/brainstorm/the-irb-and-the-future-of-fieldwork/38160 )
by Laurie Essig
(http://chronicle.com/blogs/brainstorm/the-irb-and-the-future-of-fieldwork/38160 )
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
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
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. . . .
“ 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. . . .
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.” . . . .
“ 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 . . .
_______________________________________________________________________________
_______________________________________________________________________________
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 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.
These are standards that will be used to evaluate it.
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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