ethical issues in research. mcgill university study during the period 1957-60 ewan cameron at mcgill...
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Ethical Issues in Research
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McGill University Study
• During the period 1957-60 Ewan Cameron at McGill U. in Montreal administered psychedelic drugs to 52 unsuspecting patients in order to carry out brainwashing experiments for the CIA. These experiments were disclosed publicly for the first time in 1977 in the New York Times. But it was not until 1988 that the survivors received settlement.
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Tuskegee Study
• "Beginning in the 1930s, 399 men signed up with the U.S. Public Health Service for free medical care. The service was conducting a study on the effects of syphilis on the human body. The men were never told they had syphilis. They were told they had "bad blood" and were denied access to treatment, even for years after penicillin came into use in 1947. By the time the study was exposed in 1972, 28 men had died of syphilis, 100 others were dead of related complications, at least 40 wives had been infected and 19 children
had contracted the disease at birth."
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Codes• The need for regulation and codes of behavior emerged from
revelations of the research atrocities committed by the Nazis.
• The Nuremberg Code of 1947 for biomedical research was the first to focus on the importance of informed consent.
• The Helsinki Declaration of 1964 provided guidance in such areas as the use of animals for research purposes.
• Perhaps the earliest code in the social sciences was the 1953 code relating to research, teaching, and professional practices developed from over 1000 case studies submitted by members of the Amer. Psych. Association (APA) through a research study launched in 1948.
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• The Amer. Sociol. Assn. (ASA) adopted a formal code of ethics in 1969.
• American Psychological Association (1982)• The Ethical Principles in the Conduct of Human Research
with Human Participants
• The National Research Act (1974)• Passed by Congress for the purpose of protecting human
subjects participating in experiments.
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However, the responsibility for ethical research ultimately lies with the individual researcher.
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Letter of Introduction
Perhaps Signed By
• Boss
• CEO
• Professor
Letter Should Specify
• Precise rationale for research
• How exactly it will involve participants
• How results will help participants
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Other Ethical Factors
• Never Any Pressuring of Participants
• Safety of Participants Essential
• Every researcher must receive precise, appropriate credit.
• One Should Use One’s Research in Some Way
• One Should Try to Make Results Known to Participants
• One Should be Conscious of Possible Bad Uses of Research
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• Failure to do a Literature Review May be Seen as Unethical
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• One Should Not Cheat
• One Should Not Plagiarize
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Research Proposal
• Consideration of ethical issues is an important part of many research proposals.
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Elements of Informed Consent
• Tell participants who is conducting study
• Why was subject singled out for participation?
e.g. random samplee.g. recently given birth to 1st child etc.
• What is the time commitment?e.g. 45 minutes to complete the survey
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• Any benefits to be expected?Realistically, there are often few direct benefits.
• Any potential risks, and how have these been managed?
“Some people may experience negative emotions when discussing parental alcoholism. If you
would like to discuss these with someone, please feel free to call the study director at the number below.”
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Informed Consent
• Explain the Study and Offer to Answer Questions
It is possible that telling all might compromise the integrity of the research. However, at the end debriefing is essential.
• Participation is always voluntary.
• Provide Participants with Copy of Informed Consent Form (if relevant).
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Informed Consent
• PaymentParticipant must know of any compensation
• Confidentiality(Anonymity, on the other hand, means that no one,
including the researcher, will know the subject’s identity)
• Debriefing
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INFORMED CONSENT
• Special Populations and Coercion
Difficult for Some to Give True Voluntary Informed Consent
They might lack necessary competency
--children--mentally retarded
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INFORMED CONSENT
• Others May be Indirectly Coerced
StudentsPrison InmatesEmployeesMilitary PersonnelThe HomelessWelfare Recipients
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INFORMED CONSENT
• Factors Such As
Higher gradesEarly ParolePromotionsFear from refusingExpectations of other benefits
May Play a Part
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Sometimes Consent is not Possible
• Fake an assault in the street to gauge reaction of bystanders -- who will intervene, who will do nothing.
• Element of surprise is essential
• Problem:
– witnessing such an attack may be very disturbing to some.
– Those who do not intervene may be upset and suffer feelings of low worth.
– Those who do intervene may be injured.
• Debriefing is mandatory.
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Institutional Review Board (IRB)
• Sample Questions for Ethics Review
Investigator:Who is the primary investigator, and
who is supervising the study?
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Research Participants:• What are general characteristics of the research participants (e.g.
age, sex etc.)?
• Any special characteristics of research participants (e.g. children, alcoholics, mentally retarded etc.)?
• Any other institutions/individuals cooperating or cosponsoring the study?
• What is general state of health (mental and physical) of the research participants?
• How will subjects be selected for, or excluded from, participation in this study?
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Procedure:
• What will the subjects be asked to do, or what behaviors will be observed by the researchers?
• Will deception be used? If yes, why is it necessary?
• What is nature of the deception, and when will the debriefing take place?
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Material:
• If electrical or mechanical equipment will be used, how has it been checked for safety?
• What standardized tests, if any, will be used? What info. will be provided to the subjects about their scores on these tests?
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Confidentiality:
• What procedure will you use to ensure the confidentiality of the data?
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Anonymity
• Sometimes it’s impossible to have anonymity:• face to face interviews
• direct observation of behavior
• Important that you tell participants that their participation will not be anonymous.
• However, confidentiality may be safeguarded.
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Risks:
• Any immediate risks to the subjects, including possibly causing them embarrassment, inconvenience, or discomfort?
• Are there any long-range risks to the subjects?
• If there are risks, what is the necessity for them, and how will subjects be compensated for facing such risks?
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Psychological Harm
• Interviewing of women who’ve been raped.
• Obviously consent must be obtained.
• They’re free to withdraw at any time.
• Perhaps have psychological counseling available in case of distress.
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Bias-Free Writing
• No implication that it is “normal” or “right”
To belong to a specific ethnic group
Have a particular sexual preference
Engage in a particular life-style
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Language is Particularly Important
• As far as possible use gender-neutral wordse.g. PARENTING rather than MOTHERING
• Careful about assuming that certain professions are gender-related
e.g. “The physician . . . he” “The scientist . . . he”
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Avoid Sexual Stereotyping
• e.g. “A bright and beautiful female professor”
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Careful with too many gender-biased pronouns
e.g. “A consultant may not always be able to see HIS clients.”
Other possibilities:– use the plural form:
“Consultants . . . their clients”
– Delete the adjective“. . . to see clients”
– Vary female and male adjectives, i.e. sometimes write “her clients,” sometimes “his clients.”
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Avoid language that reinforces stereotypes
• e.g. “African-American students, NOT SURPRISINGLY, won the athletic events.”
“The Irish contingent, as we might expect, drank very heavily at the party.”
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Don’t make unsupported assumptions about various age groups.
e.g. that the elderly are less intellectually able.