1
Q
_____ and ____ used interchangeably.
A
- ethics
- respect
2
Q
Ethics policies in Canada were developed as a response to…
A
historical practices of unethical treatment of people in research
3
Q
Give examples of historical practices of unethical treatment of people in research.
A
- Nazi medical experiments
- Tuskegee syphilis experiments
- Willowbrook study
- Texas Vampires
- Nutrition studies in Canada
4
Q
What happened with Nazi medical experiments?
A
- during WWII
- examine the limits of human endurance at extremely high altitudes
- placed in low pressure chambers
- often led to severe injury or death
5
Q
What did the Nazi medical experiments lead to?
A
- Nuremberg Code (1947)
- 10 commandments of ethical human medical research
6
Q
What happened with the Tuskegee syphilis experiments?
A
- Alabama 1932-1972
- examined the effects of untreated syphilis among 400 black men
- Penicillin identified as treatment in 1950s, but studies continued
7
Q
What happened with the Willowbrook study?
A
- new residents of the Willowbrook institute for people with intellectual impairments were unknowingly /systematically infected with hep virus
- researchers said the patients would eventually contract the disease anyway
- claimed that purposefully infecting the patients would provide opportunities for researcher to monitor the course of the disease = less complications
8
Q
What happened with the Texas Vampires?
A
- Baylor College of Medicine in Texas
- study in Newfoundland and Labrador
- studying family members who had a greater than average risk for a genetic heart
- vampires: bled participants to collect their DNA then vanished without sharing results
9
Q
What happened with the nutrition research in Canada?
A
- 1940s-1950s
- Indigenous children denied basic health care and dietary requirements
- more than 1000 children in residential schools were given less than half their daily nutritional requirements
- used as the baseline
10
Q
TCPS 2 stands for:
A
2nd edition of the “Tri-Council Policy Statement: Ethical Conduct for Researchers Involving Humans)
11
Q
TCPS 2 was developed to ensure that…
A
all studies respect humans
12
Q
What are the 3 core principles of TCPS 2?
A
- respect for persons
- concern for welfare
- justice
13
Q
What does respect for persons of the TCPS 2 include?
A
- intrinsic value of human beings
- obligation to respect the autonomy of individuals who are directly involved in research as participants
- includes those whose data (eg. biological materials) are used in research
14
Q
What does concern for welfare of the TCPS 2 include?
A
- quality of that person’s experience of life
- ensuring the benefits of participation outweigh the risks
- ex. physical pain, emotional discomfort
15
Q
What does ‘justice’ of the TCPS 2 include?
A
- obligation to treat people fairly and equitably
- certain groups are often treated unequitably and unfairly in research (ex. children, prisoners, elderly)
16
Q
What are the 2 important ethical standards?
A
- researchers need to provide the necessary protection of participants
- research needs to result in shared benefits, whereby the research meets the needs and priorities of both researchers and participants
17
Q
All Canadian universities that govern research have their own ______.
A
Research Ethics Board (REB)
18
Q
Biohazard:
A
- any organism, or its derivative that could negatively influence another organism
- ex. blood, sweat, saliva
- need to consider how to handle, store, and dispose
19
Q
Researchers might need to adhere to ______ or _____ ethics policies. Give examples.
A
- organization or community-specific
- ex. hospital based research requires medical institution ethical clearance
- ex. studies in NWT need Scientific Research Licence (familiar with traditions and cultures of local communities)
20
Q
Researchers need to consider if there are any conflicts of interests that could arise from…
A
their proposed question and purpose at the beginning of their study
21
Q
Conflicts of interests might occur when the study…
A
places researches (or the university they are associated with) in a conflict with their duties related to research, persona, or institutional interests
22
Q
Give an example of conflicts of interest.
A
researcher’s economic investments or interpersonal relationships
23
Q
What does article 7.4 of the TCPS2 say?
A
- in research proposals submitted to REB, researchers have to disclose any perceived conflicts of interest (individual, institutional) that they are aware of
- REB will determine appropriate steps to manage it
24
Q
What happened in 1996 with Nancy Olivieri?
A
- Researcher with U of T and Hospital of Sick Children
- Clinical trials to test a drug that could treat blood disorders
- Found evidence of unexpected medical risks
- Told REB and pharmaceutical company
- REB told her to tell participants
- Pharmaceutical company said she signed a confidentiality agreement
- Olivieri told participants, trials were terminated
25
Discuss the ethics of the Olivieri case.
- participants had the right to know (process of consent)
- had responsibility to tell them (concern for welfare)
- pharmaceutical company had interests in protecting the drug
- public interested in ethical integrity of research
26
What are the keywords in process of consent?
- free
- informed
- ongoing
- voluntary
- withdrawn at any time
27
How does TCPS 2 feel about offering participants incentives for participation?
- neither discourages or promotes
| - incentives shouldn't be so large that they forget about the risks of the study
28
What happens when the intended participants of the study lack the capacity to understand their rights and potential consequences of their participation? Typically, who are these people?
- children, those with permanent intellectual impairment
- consent from authorized third parties must be sought and maintained
- might also need participant assent (approval) or willingness to participate
29
When might partial disclosure or deception be necessary?
- in research that seeks to understand how people respond or behave in certain situations
- common in bias research
30
What 4 conditions that need to be followed when using partial disclosure or deception?
- must be able to demonstrate that the study does not involve more than minimal risk to the participants
- welfare of participants is not adversely affected because of the alteration of consent
- must show that partial disclosure or deception is necessary to answer the research questions/conduct the study
- need debriefing or full disclosure to be provided at the conclusion of the study
31
Privacy:
- their right to be free from intrusion of others
| - researchers must consider how they will work to protect the privacy of participants
32
Confidentiality:
researchers' obligation to safeguard entrusted information
33
Respect for privacy requires that researchers...
treat participants in a confidential manner
34
What is article 5.1 in the TCPS2?
- researchers shall safeguard information entrusted to them, not misuse or wrongfully disclose it
- institutions need to support their researchers
35
In the design of the study, researchers need to outline the strategies that will be used to ...
safeguard personal information
36
Give examples of how researchers can safeguard personal information.
- participants might be given identifiers (code, pseudonym)
- paper copies need to be stored in a locked location
- electronic files need to be password protected
- paper documents need to be shredded when no longer needed
37
Why can't privacy and confidentiality always be controlled?
- ex. focus groups
| - ex. qualitative study: some want pseudonyms, some want to be recognized
38
Why are many Indigenous people distrustful of research?
it has been used with colonialists practices that have resulted in exploitation
39
What happened in 1980 arthritis study?
- collection of blood samples from first nations
- found out their blood was used for other research purposes, including isolation of mitochondrial DNA for determining ancestry
40
Describe how there is no single good ethics policy to guide researchers.
- certain policies are commonly used
- certain communities might have their own specific ethics policies to guide research conducted with members of their community (researcher's responsibility to adhere to these)
41
Justice:
treating people equitably and fairly
42
When can justice be compromised?
when there is a real (or perceived) power imbalance between the researcher and participants
43
What is important to know when it comes to Indigenous people and justice?
need to know historical practices that might impact justice in current studies
44
Name 2 special ethical considerations for research with Indigenous people.
- requirement of community engagement with Indigenous people is necessary under certain conditions
- respect for community customs and codes of practices
45
OCAP principles:
- ownership
- control
- access
- possession
46
Ownership:
- acknowledges relationship between a FN community and its cultural information or data
- any information collected from FN peoples is owned by the community
47
Control:
FN peoples and respective communities have the right to control all aspects of research that impact them
48
Access:
FN people have the right to access any information about themselves regardless of where the information is held
49
Possession:
rights of FN peoples to physically possess all and any research data that are collected
50
Why is animal research extensively used in kinesiology research?
- provides unique insight into biological structure and function
- understand how the body functions in states of health and disease
51
CCAC:
Canadian Council on Animal Care
52
CCAC developed...
nationally/internationally recognized policy statements for the experimental care and use of animals in research
53
What are the 3 Rs?
- replace
- reduce
- refine
54
Replace:
avoid or replace the use of animals wherever possible
55
Reduce:
- employ strategies that will result in fewer animals being used
- consistent with sound experimental design
56
Refine:
modify husbandry or experimental procedures to minimize pain and stress
57
In ethical decision making, we are looking to minimize _____ and maximize _____ to the....
- damage
- benefit
- community, profession, career
58
Ethical dilemma:
- a situation that requires ethical action
- no clearly correct ethical choice
- the professional is required to do two (or more) things, if she does one thing, she cannot do the other
59
Ethical residue:
wondering whether the correct choice was made
60
Why doesn't the fear of making wrong decisions absolve professionals from making choices in ethical dilemmas?
the choice not to act is itself an ethical decision
61
9 steps for ethical decision making in Canadian Code of Ethics for Psychologists:
- develop ethical sensitivity
- consult code of ethics
- search ethics literature
- develop self-awareness
- apply ethical principles
- develop alternative courses of action
- consult with colleagus
- take action
- reflect upon the results of your actions
62
To develop ethical sensitivity, we need to recognize that...
choices we make as professionals affect other people
63
To develop ethical sensitivity, we need to consider...
- who would be affected by either decision
| - recognize this early, be proactive (explain confidentiality and limitations at first meetings)
64
The codes of ethics are designed specifically to...
offer a guide to professionals in their ethical decision making
65
The codes of ethics helps ensure ______ of a profession.
credibility
66
The codes of ethics offers ______ for the clients they serve.
protection
67
The codes of ethics can't cover all situations, and therefore need to be...
interpreted, modified, applied
68
What types of ethics literature should we be searching?
- ethics texts and journal articles
| - Ethics for the Practice of Psychology in Canada
69
When would it be useful to search ethics literature?
when a profession's code of ethics doesn't adequately address the specifics of a situation
70
Developing self-awareness includes ...
knowing the bias you bring to the situation
71
Why should we apply ethical principles?
- ethical principles help to shape most codes of ethics
| - ethical principles underlie many ethical standards in research
72
What are the 6 common ethical principles?
- autonomy
- nonmaleficence
- beneficence
- justice
- fidelity
- veracity
73
Autonomy:
freedom to make one's own choices and take actions based on one's own personal values and beliefs
74
Nonmaleficence:
obligation not to inflict harm upon others intentionally
75
Beneficence:
obligation to act for the benefit of others
76
Justice:
fair, equitable, and appropriate treatment of others
77
Fidelity:
fulfilling one's responsibilities of trust
78
Veracity:
truthfulness
79
Conflict among ethical principles often make it an ____ _____.
ethical dilemma
80
How can we develop alternative courses of action?
- clearly detail the probable costs and benefits of each possible action
- all options should be brainstormed (can lead to unique situations)
81
Developing alternative courses of action is a chance to ...
reflect on who might be affected in the situation, how each action will influence them
82
Why should we consult with colleagues?
- can offer perspectives and options that you haven't considered
- can provide a more objective lens
- help protect against decisions that are closely entwined with personal bias or conflicts of interest
83
What do we have to consider when consulting with colleagues?
- other ethical issues in the consultation process
| - do not disclose the identity of your client
84
When consulting with colleagues, it is good to consult with _____.
ethics boards of professionals (REBs)
85
Taking action includes:
- implementing the chosen action plan
- informing the people who are going to be affected
- commitment to assume responsibility for actions
86
Why is it a good idea to document the ethical decision making process?
- can help in defence of actions taken
| - shows awareness and commitment
87
When reflecting upon the results of your actions, your actions should be consistent with....
what someone demonstrating outstanding ethical virtues would characteristically do
88
Ethical virtues qualities:
- compassion
- discernment
- trustworthiness
- integrity
- conscientiousness
89
____ ____ should govern all ethical decision making, regardless of.....
- ethical virtues
| - whether the situation is covered in a code of ethics
KIN 209
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