cases by mamapeirong

VIEWS: 4 PAGES: 24

									Case studies (A – J)



The following scenarios have been drawn from various web sources and are intended to

stimulate critical discussion about real life research ethical issues. They have deliberately been

chosen from United States sources in order to encourage you to think about basic ethical

issues, rather than focussing on our own taken-for-granted legal and institutional constraints

(although the case-studies do sometimes involve US law).




It is in that spirit - trying to get down to basic ethical issues - that these scenarios were

discussed.




All cases except (J), Kennewick Man, are anonymised.




                                                                                                     1
(A) Ethical issues in research with children
(this scenario was discussed at the June workshop)


Dr. Morris Swakowski, an epidemiologist, is working with Beatriz Piacere, a post-doctoral fellow, on
a research project involving asthma and wheezing in African-American and white adolescents. They
have just completed a school-based study in which they found a very high prevalence of diagnosed
asthma and wheezing in eighth graders.


In the literature, the most current research is investigating the association of asthma with exposure
and allerges to dust mites and cockroaches. Dr. Swakowski and Beatriz want to find out whether
asthma and wheezing are associated with exposure and sensitivity to dust mites and cockroaches in
their research population - an urban/suburban community in the South with high humidity, which
provides a favorable environment for dust mites. They also want to evaluate several low-cost
interventions that could reduce the children's exposure to these two allergens.


This research is being conducted in collaboration with the large public school administration of the
city. The school population is 40 percent African-American, and 28 percent of the children are on
the free school lunch program.


The researchers decided to address the following questions:
   Do children with asthma or wheezing have higher exposures to dust mites and cockroaches
    compared with children who do not have asthma or wheezing?
   Do children with asthma or wheezing experience a decrease in symptoms in response to
    exposure to the interventions, compared with children who are not exposed to the
    interventions?


The two investigators agree on the sampling strategy: children who, in the previous school-based
study, self reported either 1) diagnosed asthma 2) wheezing symptoms with no asthma diagnosis,
and 3) no wheezing symptoms and no asthma diagnosis. After parents have given their informed
consent, the children will be brought to the health clinic, enrolled, and given a skin prick test for
twelve different allergens. Skin prick tests are done to determine whether the children are allergic
to specific allergens including cockroaches and dust mites, which may be triggers for their
wheezing attacks. Dust mite and cockroach allergen levels also will be measured in their homes.




                                                                                                   2
Half the participants will receive the environmental interventions at the start of the study, and the
rest will receive the interventions at the end of the study. The interventions are plastic bedcovers to
reduce the dust mite population and cockroach motels to reduce the number of cockroaches.


In discussing the research design with the pediatrician and the nurse working on the project, the
researchers become aware of the issue of anaphylactic shock. The risk of anaphylactic shock from
the skin prick test is 1 in 1 million in the general population. Although the risk to the child occurs
only at the time the test is conducted, possible consequences include death. If a child begins to go
into shock, the standard treatment is immediate administration of epinephrine, which will stop the
reaction if a sufficient dose is given. However, the administration of epinephrine is best done by
trained staff in a hospital setting.


The nurse in the study is very concerned about this risk of anaphylactic shock. However, she
considers that the study might benefit the symptomatic children. If some children have unknown
allergies that trigger their asthma or wheezing, this study would benefit them by identifying the
allergens that trigger their wheezing attacks. However, the risk of anaphylactic shock is a risk for
the control group to be used to answer the first question. Children in the control group will gain
little from participating in the research, and it will actually put them at risk. The researchers must
consider whether it is necessary to drop the control group.


Discussion Questions
   What are some of the ethical and risk concerns with the protocol?
   How would you suggest that the investigators address these concerns?




                                                                                                     3
(B) Do the Ends Justify the Means: The Ethics of Deception in Social Science Research
(this scenario was discussed at the June workshop)

Part 1
Ann Smith is a social psychologist who wants to study attitude change. She submits a proposal to
her institution outlining details of a study that will examine the attitude change of participants
following a workshop on environmental issues. Smith plans to identify attitude change by
administering a pre-test and a post-test. She is worried, however, that the participants will
recognize that she is looking for changes in their attitudes and that this knowledge will influence
their answers on the post-test. To address this problem, she plans to disguise the issues she is
most interested in; when she administers the tests, she will give a very broad explanation that does
not fully disclose the nature of the study. Her proposal includes these procedures and an
explanation of why she believes they are necessary; she also includes a plan to "debrief" the
subjects (tell them the real purpose of the study) after they finish taking the second test.


Part 2
For a study on conformity to group norms, Ann Smith constructs a survey designed to measure
attitudes toward a controversial topic. The research proposal she submits describes her study
procedures: She will use as subjects students in a large introductory psychology course she teaches.
She includes the following paragraph in her syllabus? "One of the requirements of this course is
your participation in a psychology experiment, through which you will be introduced to the
methods of psychological research. If you prefer not to participate in the experiment, you may
instead complete a 50-page research paper on a psychology topic of your choosing." She will bring
two groups into the laboratory, ostensibly simply to obtain their attitudes on the survey. One group
will be encouraged to discuss responses to the survey freely amongst themselves; the members of
the other group, acting as controls, will take the survey independently. In the first (experimental)
group, Smith will "plant" several confederates instructed to advocate loudly one side of the issue in
question. Based on the results of similar studies, Smith believes that the majority of responses
given by subjects in this experimental group will conform to the position advocated by the
confederates, indicating the powerful influence of the group norm. Following the experiment, all
subjects will be debriefed as to the true purpose of the experiment.


Discussion Questions
   Is deception of subjects ever justifiable? If so, under what conditions?



                                                                                                   4
   Can such questions as these be answered without deceiving subjects? Do potential benefits
    of such experiments outweigh psychological risks to subjects? At what point, if ever, do
    benefits of such experiments outweigh costs?
   If the consequences for subjects are positive (in Case 3, for example, if subjects who
    helped feel good about themselves, and subjects who did not help resolve to do so in the
    future), can the researcher conclude that the deception was justified?
   How might conducting experiments that involve deception of subjects affect the
    researcher?




                                                                                            5
(C) Ethical Issues in Longitudinal Research with At-Risk Children and Adolescents
(this scenario was discussed at the June workshop)


Dr. Judy Brewster, long interested in the effects of exposure to maladaptive environments on
development, plans to design a study to examine resilience. Why are some individuals able to fend
off the deleterious consequences associated with stressful environments and adverse circumstances,
while others are not? What characteristics are associated with adaptation to such environments? To
learn more about the characteristics associated with resilience to environmental insult, Judy will
study fourth, sixth and eighth graders who have been exposed to violence within their
communities.


Youths will be assessed at six-month intervals for a period of four years. Assessments will be
conducted in school through group-administered written surveys and individual interviews of
approximately one to two hours in length. The amount and frequency of exposure to community
violence will be measured, as well as short- and long-term psychological (anxiety, depression,
perception of social support),      behavioral (academic achievement,       risk   engagement) and
adaptational (psychological and behavioral coping) responses. Aside from assessment interviews,
participants will have no contact with the researcher.


Ms. Rosen, the principal of a private parochial school, has agreed to allow her school to participate
in the study. She is eager to assist her students and suggests that Judy begin at once. When Judy
asks for advice on how to approach parents for their permission, the principal says that it is not
necessary, as the school supports the study. Judy is unsure of how to respond. She recalls that
ethical guidelines do not require parental consent to conduct evaluations of educational curricula;
however, she is not evaluating a curriculum.


Judy explains to Ms. Rosen that her funding agency and university institutional review board
require that she obtain parental consent. Ms. Rosen notes the difficulty in obtaining responses from
every parent in the fourth, sixth, and eighth grades; she suggests that a letter be sent to parents
advising them that the study will be conducted and asking them to return the permission form if
they do not want their child to participate.


Discussion Questions




                                                                                                   6
   What are Judy's responsibilities to the students, parents and Ms. Rosen, if any?
   What are the potential consequences of not obtaining consent for the students, parents,
    Ms. Rosen, and Judy, if any?
   Given the potential consequences, should Judy obtain parental consent?
   Are there alternative methods of obtaining consent? What are the advantages and
    disadvantages of each?
   How should Judy obtain parental consent?




                                                                                          7
(D) Issues in informed consent
(this scenario was discussed at the June workshop)


A grant has been given by a US university to the research unit of a Ministry of Health of a West
African Country to conduct a double blind study to evaluate the impact of periodic doses of high
dose Vitamin A on the incidence of diarrhea and ARI in children less than five years of age. A
traditional leader and council of elders governs the community in its daily affairs though the
national government retains control of tax collecting, the police, military, etc. To inform the
community of the impending study the village was called together by the chief and council. In a
festive environment, the investigators described the study and answered all question from members
of the community and council. After the description, and question and answer period, the village
chief and council met briefly and gave their approval. Shortly thereafter, in accordance with the
guidelines provided by the Institution Review Board of the university, the principal investigator and
his field staff began going house to house to obtain signed informed consent from the parents
giving permission for their children to participate in the study. The mothers (usually the one at
home during the visit) said that the chief had already approved and therefore they did not need to
sign anything; besides they usually do not sign anything because they cannot read what they are
signing. On the second day the field team making the home visits was summoned to the chief's
house where they were politely informed that approval had been give for the study and it was both
unnecessary and unacceptable to seek individual signatures. That the chief/council had approved
was enough. When the field staff said that they were required by the grant agreement obtain
signed informed consent form they were told that if they insisted on doing so they would have to
leave the community.


A summary of the study design is as follows: high dose vitamin A capsules or placebo would be
administered in a double blind fashion every four months for one year to children from 6 months
to 5 years. A record of morbidity (diarrhea and ARI) and mortality data would be measured by
weekly and blood samples would be drawn (less than 2cc) at 0, 6, and 12 months for Vitamin A
status.




Discussion Questions




                                                                                                   8
   How should this problem be handled by the field investigator? The donor?
   How critical is informed consent in this setting?
   Is informed consent culturally bound or is it a universal principal that cannot be
    compromised?
   Are there circumstances when informed consent is unnecessary?
   Does it protect the investigator and/or the subject




                                                                                     9
(E) Anonymity: two case studies
(scenario was discussed at the March workshop)


First case study
‘Mira Walton’ spent two years in Melanesia conducting a broadly defined community study in a
rural village with a population of about 1,500 people. She returned to the United States and wrote
a 500-page monograph in which she included specific instances of conflicts of interest and dispute
settlement in a variety of contexts: broken marriage contracts; instances of alleged encroachment of
farming on neighbours' lands; a case of theft; a charge of mismanagement of community resources
which was made against the village headman; family feuds; and blood feuds. Following the
conventions of the American Anthropological Association, Walton decided that the village and its
location should be disguised and that pseudonyms should be used for all individuals mentioned in
the published ethnography.
A year after publication of Walton's ethnography, which was three years following her departure
from the field, she returned to the community of study, taking along copies of the book. These
copies were distributed to the people who had been most helpful during her original research
project. Most of these individuals were literate and readily understood the contents of the book.
Walton asked and received permission to conduct further study in the village. She settled into her
task.
Six months later, a meeting was called by one of the elders in order that the community members
might discuss the book about them with Walton. Walton was surprised by the first remarks
concerning the book; namely that, although she had done an accurate job of characterizing the
situations of dispute settlement and the overall political structure of the village, they were surprised
that she had (1) got the name of the village wrong, and (2) not accurately named the individuals
involved in the disputes. More than 60 people were at the meeting, representing of the families in
the village. Their murmurings indicated strong agreement that she should have given the actual
name of both the village and individuals. Furthermore, she was explicitly told that in the next book
she should be more careful to use the correct village name and use the correct names of villagers
who asked her to do so or who gave permission for her to do so.
Ironically, Walton had debated the issue of anonymity with colleagues in the United States. She had
argued that in order for further studies to be done accurately by other researchers, it was necessary
to specify the precise location and name of the village. And, in order to judge credibility of
information obtained from the villagers, she had wanted to provide the names of the individuals
who worked most closely with her. They had argued that it was her responsibility to protect "her


                                                                                                      10
informants and her community" from outside interference or other possible negative consequences,
and cited examples of villages and villagers who had come to harm because the anthropologists in
question had used real names.
Faced now with the villagers' criticisms, Walton was in a quandary. Given that she had a contract
for a new book about the community and that the community expected her to publish this new
book...


   Should she defer to the villagers' insistence that she publish the correct name of the
    village and the correct names of villagers who had asked or given permission for her to do
    so?
   Or, should she rely on anthropological conventions and cautions (as stated in the
    Principles of Professional Responsibility of the American Anthropological Association) and
    use pseudonyms in the new book?


What do you think?




                                                                                                    11
Second case study


‘Mary Jones’ spent three years working on an applied medical research project in an urban black
community in the United States. She wrote a series of articles to be published in relevant
professional journals. The data included sensitive materials about specific epidemiological problems
faced by members of the community, as well as strategies and tactics used to improve health care
delivery by the local community. Before submitting her articles for publication, Jones asked some
individual members of the community concerned to read the papers for comments and criticism.
Individuals from the community health centre who had been part of the project did so and set up
a meeting to discuss the contents of the manuscripts.


The discussion began with several individuals complimenting Jones on her accurate characterization
of the local situation and the sensitive way in which she addressed their health care problems and
ways they chose to solve some of these. Several moments of silence passed after these initial
remarks. Then an elder asked Jones why she had not given the accurate name of the community
health centre where much of this activity took place. Immediately, someone else asked why she had
not given the accurate name of the town where the centre was located. A third person asked why
there were no names given for the people at the centre and in the community who were involved
in the project and in the ‘struggle to improve health care for our people’.


Jones countered with explanations regarding professional anthropological ethical conventions that
specified the use of pseudonyms in certain types of reporting, specifically if there was any chance
that individuals or a community might be harmed or discredited. She provided some examples of
instances elsewhere where people had been harmed because the actual name of the location, and
the names of people there, had been published in a scientific report. The participants at the
meeting told her that she should use her own judgment in the final analysis, but that they felt that
even if she could not see that using the name of the health centre might help them, at least she
should name some of the people who had helped her and her students during their three years of
work, even though Jones and her students were on the applied project to help the community.


So the decision was passed back to Jones by the community health centre members. In this light...


   Should Jones defer to the community health centre members' desire that she publish the
    name of the health centre, the town in which the health centre was located, and/or the


                                                                                                      12
    names of individuals who, during the meeting described above, had asked or given
    permission for their names to be published?
   Or, should she retain the use of pseudonyms throughout her academic papers?


More generally:


   What are the general ethical issues raised by these cases? Why do you think they are
    ethical issues?




                                                                                           13
(F) Consent forms and ethics committees, medics and social scientists
(scenario was discussed at the March workshop)


As part of a long-range investigation of the social and physiological effects of heroin, ‘Jim Sanders’,
a sociologist affiliated to a medical school, set up a study of pregnant women and their infants. The
study design involved statistical comparisons of the course of pregnancy, birth, and infant
development, in 30 addicts and 30 non-addicts; data were to be gathered from hospitals and
public health clinics in three inner city neighbourhoods.


The medical school Institutional Review Board (IRB) approved the study, with the requirement that
the women sign detailed consent forms indicating that they understood the purpose of the study
and agreed to take part. It was agreed that the clinic nurses would read the consent forms to the
women and ask them to sign.


Two months into the study, Sanders, visiting his research sites, discovered that few nurses were
using the consent forms; instead, informal and undocumented consent was being obtained.


Sanders was now in a quandary. Institutional Review Boards are designed to protect those studied
from harm, and also to make sure that people do not unknowingly or unwillingly participate in
research that might put them at risk. The medical school IRB, which was accustomed to dealing
with biomedical experiments that pose a risk of physical harm to subjects, routinely required
written consent from those studied.


In this case, however, the research posed no possibility of physical harm. Instead, the only possible
risk to those studied came from the signed consent forms, which would document that the
addicted women were engaging in illegal behaviour. This was the reason why the nurses were
acting informally, rather than using the formal procedure that the IRB had approved.


Given this dilemma...


   What are the ethical issues raised by this case? Why do you think they are ethical issues?
   Should Sanders go back to the Institutional Review Board and attempt to educate them
    about the realities of social research? This might obstruct his project or endanger his
    research subjects.


                                                                                                     14
   Should he leave well enough alone, let the IRB think he was following their procedures
    while allowing the nurses to continue obtaining verbal undocumented consent? In
    deceiving - or at least, not enlightening - the IRB, he would protect his research subjects,
    and keep his study going.
   What other courses of action might Sanders consider, in order to protect his subjects and
    his study without condoning or engaging in deception?
   What should he do about the behaviour of the nurses concerned?




                                                                                               15
(G) ‘Forbidden knowledge’: to whom is one responsible?
(scenario was discussed at the March workshop)


Like phenylketonuria (PKU), BCK is a significant metabolic birth defect, inherited as an autosomal
recessive disorder (i.e. symptoms occur only when both of the individual's BCK genes have a
specific defect). BCK results from the body's inability to break down certain components of protein.
A restricted diet is the only treatment for the disorder. If treatment is not initiated within the first
four weeks of life, BCK patients suffer severe neurological damage and will die if treatment is
withheld. If affected individuals maintain the special diet, they can live full lives.


BCK is rare in the general population, but occurs at an alarming frequency in ‘Community Z’, an
isolated closed society which distances itself from the general population by way of religious beliefs
and customs. One custom relevant to this case is mate selection, which is a rite of passage from
youth to adulthood. A young Z male must choose a partner from within his own community, based
on the church's rules. This practice is enforced by church elders, who have a ‘go-between’ role for
the families of the young man and his erstwhile bride of choice. For researchers, Community Z
provides an ideal opportunity for studying genetic disorders like BCK, since it has a relatively
‘closed’ gene pool and maintains extensive genealogical records.


After the birth of several BCK infants, the elders, who hold roles of authority in Community Z,
approached a genetic research team asking for genetic screening to identify families at risk of
having an infant with BCK, and to provide diagnostic testing to enable immediate treatment of
affected infants. The research team develops a non-invasive DNA test to identify carriers of the BCK
allele (carriers are unaffected individuals who have only one copy of the defective BCK gene.)
During the initial screening, testing is done for all who request it, and results are provided to those
who inquire. The majority of individuals tested are married. The elders do not recommend testing
prior to marriage.


After processing the samples, the researchers are surprised to find many more carriers than
expected, based on the number of BCK infants previously born in the community. If the gene pool
of a group of people contains certain recessive tendencies, the probability that a child will be born
with a recessive disorder such as BCK is greater when the community members intermarry.
Although the incidence of BCK is higher in Community Z than in the general population, fewer
affected infants than statistically predicted have been born in Community Z. This discrepancy is


                                                                                                           16
    quite interesting to the research team. The results lead the research team to suspect one of several
    possibilities. Either some natural phenomenon is occurring that allows more cases of non-
    carrier/carrier mating than carrier/carrier mating, or perhaps the elders discourage mating between
    certain families because carrier status is well-known throughout the community.


    The research team is puzzled by these findings. They question whether providing testing to
    unmarried community members will affect their relationship with the elders and whether carrier
    testing will affect future mate selection and intrude upon the cultural and religious norms of
    Community Z.


       What are the ethical issues raised by this case? Why do you think they are ethical issues?
       Although the elders do not recommend it, would it be appropriate for the research team
        to offer testing to unmarried individuals, when testing may affect mate selection? Are the
        cultural and religious norms of this community relevant? Explain your reasoning.
       Is mate selection a social issue that should not concern the research team? Keep in mind
        that the team's relationship with the elders is paramount in continuing the study of BCK.
        Explane for your response.




                                                                                                      17
(H) Sensitive research findings about individuals: when should they be shared with research
subjects?
(scenario was discussed at the March workshop)


For her dissertation, ‘Wilma’ plans to conduct a prospective pregnancy study that will involve
couples who are trying to conceive. This study will include questionnaire data, as well as daily urine
samples collected for three months by the female participants. The daily urine samples will be
stored in the freezers of the female participants, and a nurse will pick up the samples monthly. The
urine samples will be used to test for pregnancy by a sensitive assay (looking for the hormone
hCG). This assay will give a number value, not a qualitative (i.e. positive or negative) value for
pregnancy assessment.


All women have low levels of hCG, and baseline levels are needed for each individual woman. Thus,
in detecting early pregnancy, a standard value is not used. The urine samples will be tested six
months to a year after their collection. The assay will determine that some of the women did not
become pregnant, some had a clinically recognized pregnancy, and some may have been pregnant
but were unaware of the pregnancy (i.e. the woman may have had an early spontaneous abortion).


Wilma is meeting with her adviser, ‘Dr. Knowledge’, to discuss the study proposal that will be
submitted for IRB (i.e. ethics committee) approval. During the course of the meeting, Knowledge
reviews Wilma's consent form, questionnaire and protocol for collection and testing of lab samples.
In reviewing Wilma's protocol, he does not see any indication that Wilma plans to inform the
couples of the results of the pregnancy tests.


Knowledge tells Wilma that she needs to decide whether she will inform the couples of the results
of the pregnancy tests, and indicate in the protocol the reasons for her choice. The consent form
must also state whether results will be available to the study participants. Wilma is torn. She is not
sure whether she should provide the results to the participants. She is worried about the
consequences of some couples learning that they were actually pregnant but lost the pregnancy.


At the suggestion of Knowledge, Wilma arranges a meeting with all her thesis committee members,
to discuss what she should do. Unfortunately, the other committee members do not agree with
each other. ‘Dr. Ready’ believes that the researcher has an obligation to provide test results to
participants and emphatically tells Wilma to make that part of her protocol. ‘Dr. Supply’, on the


                                                                                                     18
other hand, believes that the participants should not get their results, because there is no benefit in
being informed of the results after the fact.


   What are the ethical issues raised by this case? Why do you think they are ethical issues?
   Should Wilma notify couples about their pregnancy test values? Does Wilma have an
    obligation to inform all participants of their results, as Ready suggests?
   Is there any medical benefit in informing couples of their pregnancy test results?
   How should Wilma handle the conflicting opinions of her committee members?




                                                                                                    19
(I) Ethical and moral conflicts: the professional, the personal, and the legal
(scenario was discussed at the March workshop)


‘John’, a licensed psychologist, is Principal Investigator for the ‘Assist’ Project. His project is
designed to identify behavioural trends among HIV-positive adults in the New York City area.
Participants were recruited from HIV/AIDS support groups, HIV/AIDS advocacy and service
organizations, and through publicity in local bars, clinics and media outlets. John uses several
measures to identify patterns among these individuals. He looks at help-seeking behaviours,
physical and emotional symptoms, nutrition and dietary habits, sexual behaviour and knowledge of
HIV/AIDS.


John uses an individual interview format. Each participant is asked to sign an informed consent
form, guaranteeing that all information revealed during the interviews will be kept confidential. The
consent form describes the study and informs participants of the risks involved, which John
identifies as minimal. Each participant is paid $50 for each interview. Participants in the study are
also provided free psychological counselling and medical care. Participants are interviewed three
times over a two-year period.


In accordance with the research protocol, John asks a participant during one of the initial interviews
about her current sexual practices. The participant tells John that she is having unprotected sex
with her boyfriend. She states that her boyfriend does not know about her HIV status and that she
has no plans to reveal her condition. Later during the interview she mentions the name of her
boyfriend. John notes the information and continues with the interview.


Upon going back to his office, John becomes anxious about what he was told by the participant.
He ponders what he should do. John thinks about his moral responsibility from a relational
perspective, assessing the ethical problem from the standpoint of his responsibilities to preserve
the scientific integrity of the project, the participants' confidentiality, and the boyfriend's welfare.


John considers the following facts. First, several US states have implemented laws based on the
ruling of Tarasoff vs. Regents of the University of California (1975). These laws require professionals
to warn an individual of prospective danger, if the professional has a) a special relationship with an
individual, b) the ability to predict that harm will occur, and c) the ability to identify the potential
victim. However, no state has thus far attempted to apply this law in the context of a scientific


                                                                                                           20
investigation, and New York State does not have a law that requires a professional to warn
potential victims.


Second, current New York State law does prohibit a licensed psychologist from revealing a client's
HIV status. In addition, under Principle D: Respect for People's Rights and Dignity, The Ethics Code
of the American Psychological Association states that psychologists should respect people's rights
and dignity, including their right to privacy, confidentiality and autonomy. (APA, 1992)


However, third, under the APA Ethics Code, Standard 5.05, psychologists are allowed to disclose
confidential information without the consent of the individual, either as mandated by law or if
permitted for a valid purpose, such as to protect others from harm. More generally, under the APA
Ethics Code Standard 1.14, psychologists have a duty to minimize harm where it is foreseeable and
unavoidable. (APA, 1992)


   What is John's obligation to the integrity of his research project, to the research
    participant, to the research participant's sex partner, to the HIV+/AIDS community, and to
    society at large?
   How should John weigh the benefits and the harms of preserving participant
    confidentiality vs. breaking confidentiality?


What should John do? Which of the following suggestions, if any, fulfils John's ethical duty as a
responsible scientist?


   He could break his guarantee of confidentiality and notify the research participants'
    boyfriend.
   He could maintain confidentiality and continue collecting data.
   He could make an anonymous call to the participant's boyfriend.
   He could try to persuade the participant to tell her boyfriend.
   He could consult with other professionals on the matter to help decide what he should do.
   He could change his informed consent in future research to include notification that
    confidentiality will not be maintained if participants indicates that they have placed an
    identified person at risk of harm.


More generally:


                                                                                                     21
   What are the ethical issues raised by this case? Why do you think they are ethical issues?




                                                                                             22
(J) The quick and the dead: archaeology, ethnicity and the weight of history
(scenario was discussed at the March workshop)


Until recently, archaeologists encountered few obstacles in excavating, and studying the remains of
the dead from, Native American sites. Native Americans had little or no voice in the planning or
execution of archaeological research.


Recent activism and lobbying by Native Americans resulted in the passage of the 1990 Native
American Graves Protection and Repatriation Act (NAGPRA). NAGPRA was enacted to address
complaints that archaeologists and museums had appropriated human remains and sacred objects
that were not rightfully theirs to control. As the act is currently written, Native America tribes can
reclaim human remains and grave goods to which they can establish a cultural affiliation. Affiliation
may in principle be demonstrated through a variety of criteria: geographical, biological,
archaeological and anthropological evidence; historical data; oral history; expert opinions; or other
relevant information. Determination of affiliation may, however, be difficult, complex and contested.
Although NAGPRA was introduced to relieve tensions created by research on Native American
societies and to ensure equitable treatment of Native Americans, it has generated fierce debate
over who has legitimate claims to the use, ownership and/or control of remains of indigenous
peoples.


In autumn 1996, a Paleo-Indian skeleton was discovered eroding from a shallow river bed in
Washington. The river is overseen by the US Army Corps of Engineers, but runs through the current
property of the Umatilla Tribe. Initial study of the skeleton suggested that it might be the remains
of a white settler from last century. However, further analysis revealed a Paleo-Indian arrowhead
embedded in the skeleton's pelvis. Radiocarbon dating of the bone also indicated a Paleo-Indian
age. With no known white settlers during Paleo-Indian times, the skeleton had to be Native
American. The age and completeness of the skeleton make it a very rare find.


Using NAGPRA, the Umatilla Tribe filed a request with the Corps of Engineers for repatriation of the
remains. Initially, the Corps agreed to this request, who planned to rebury it immediately. However,
a group of archaeologists and physical anthropologists filed an injunction in federal court to
prevent repatriation and to secure the skeleton for future study. Before the court ruled on the
injunction, however, other tribes who also have links to the area filed repatriation requests with the




                                                                                                         23
Corps of Engineers. The Corps decided that it needed more time to review the case and the
competing claims.


In the light of this case...

   Are there values that are more important than the value of scientific research?
   Is cultural autonomy one such value? Should science defer to the wishes of indigenous
    people?
   Are there times when the importance of scientific research outweighs the wishes of
    indigenous people?
   Are there moral or ethical considerations that are more important than following the letter
    of the law? If so, what implications does that have for limitations to scientific research, not
    just in archaeology, but in all disciplines?
   How can archaeologists and physical anthropologists continue to conduct research while
    while abiding by the spirit of the law?

More generally:

   What are the ethical issues raised by this case? Why do you think they are ethical issues?




                                                                                                24

								
To top