1
Q
What was bioethics like before it was bioethics? (5)
A
- 6th century BC in anceint Greece
- Understanding of the world thru fact + reason
- Extended to health and disease
- Hippocratic Oath: early example of code of ethics for medicine
- Focus on the patient-physician relationship
2
Q
What was Cicero’s pronouncement?
A
- “let the safety (welfare, health) of the ppl be the supreme law”
- focus is on the welfare of the community or population, sometimes at the expense of individuals
3
Q
How have values evolved?
A
Polytheistic religions -> Judeo-Christian tradition -> Secularization
4
Q
What were the doctors’ trials in Nuremberg? (3)
A
First of 12 follow-up trials from the initial trials by the International Military Tribunal
23 defendants, 20 of them doctors:
- 7 acquitted
- 7 death sentence
- rest went to prison
- war crimes, crimes against humanity
Turning point in ethics -> Developoment of Nuremberg Code
5
Q
What is the Nuremberg Code (1947)? (10)
A
- Consent
- Results need to be useful
- Need to build upon preexisting work
- Need to avoid unnecessary physical + mental suffering
- Don’t conduct experiments if it causes death or disabling injury
- The degree of risk to be taken shouldn’t exceed the importance of the problem
- Preparations to minimize suffering during experiment
- Need to be qualified
- Participant is allowed to leave
- Scientist needs to stop experiment if bad things are suspected to happen
6
Q
What was the effect of the Nuremberg Code? (3)
A
- Not accepted as law or official ethics guidelines by any nation or association
- Seen as an obvious response to brutal experimentations, lacking nuance
- But: influential as a building block + prototype, important milestone
7
Q
Who developed the Declaration of Helsinki (1964)?
A
Developed by the World Medical Association, revised 7 times
8
Q
How does the Declaration of Helsinki expand upon the Nuremberg Code? (7)
A
- Protection of vulnerable groups
- Scientific protocols
- Research ethics committees
- Privacy and confidentiality
- Placebo
- Post-trial provisions
- Research registration and publication
9
Q
What was the effect of the Declaration of Helsinki? (2)
A
- Controversies and arguments
- Beecher raises 22 examples of questionable science after the war
10
Q
What happened during the Tuskegee Syphilis Study? (5)
A
- Conducted 1932 - 1972
- Led by the USA Public Health Service + Center for Disease Control
- 400 African American men with syphilis, to study the disease untreated, but: 1947, penicillin readily available
- 100 deaths, 40 infections, 19 children born with congenital syphilis
- Major violation of ethical standards
11
Q
What is the Belmont Report (1978)?
A
In response to the Tuskegee study, by the National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research.
- Respect for persons: protecting the autonomy of all ppl, allowing for informed consent, courtesy and respect
- Beneficence: “Do no harm” while maximizing benefits for the reserach project + min. risks to subjects
- Justice: Fair distribution of costs and benefits to potential research participants
12
Q
What were the effects of the Belmont Report? (2)
A
Huge influence on:
- The principles of biomedical ethics (Beauchamp and Childress 1982)
- Today’s research ethics guidance and training (TCPS2)
13
Q
Describe the rise of bioethics (4)
A
- Amorphous expression of concern about untoward effects of advances in biomedical science
- Gradual formation into a coherent discourse and discipline
- National commissions
- Radical changes to the practice of scientific research
14
Q
What are 3 reasons for bioethics?
A
- Conflicts in the area of tech and human vlaues
- Difficult questions to be answered, when trad tools are subject of controversy and scrutiny
- Openness to multidisciplinary work in dealing with personal and social aspects of human behaviour
15
Q
What is utilitarianism?
A
Focus on minimizing consequences
16
Q
What is deontology?
A
Doing things based on rules/duty
17
Q
What is descriptive natural law?
A
Focus on nature’s urges
18
Q
What is the theory of justice?
A
Focus on the social good
19
Q
What are virtue ethics?
A
Ethics that focus on how someone can be virtuous
20
Q
What are the ethics of care?
A
Focus on relationships
21
Q
What is principlism?
A
Focus on having moral pillars
22
Q
What are the 4 pillars of neuroethics as a discipline?
A
- Brain science and the self (identity)
- Brain science and social policy (eg. insurance)
- Ethics and practice of brain science
- Brain science and public discourse
23
Q
Describe the cultural shift in patient engagement
A
Test subject -> Participant -> Co-producer of knowledge
24
Q
What are 4 benefits of engagement?
A
- better experience
- better health outcomes
- higher quality research
- lower costs
25
Why is patient engagement relevant in regards to the design stage of research?
- Methodology
- Outcome measures
- Steering committee
26
Why is patient engagement relevant in reagrds to the recruitment stage of research?
- Methods
- Outreach
27
How is patient engagement relevant during the data collection stage of research?
- Research participants
- Peer data collection
28
How is patient engagement relevant in the data analysis stage of research?
- Member checking
- Interpretation
29
How is patient engagement relevant to the dissemination stage of research?
- Creation of KT materials
- Dissemination plan
- Active dissemination
30
Describe the research stages of having patient engagment with a purpose
- Capture attitudes, needs and values
- Evaluate existing platforms
- Develop novel tools and structures
- Sustainability and capacity building
31
How are the ethic concerns implicated in patient engagement?
The ethics community and public need to have greater overlap in values. Meaningful patient engagement must be aligned with the values of the patient community knowing and respecting these values is critical to create positive change
32
How is researcher engagement implicated in patient engagement?
Patient engagement must include strategies for researcher and health care professional engagement to limit misinformation
33
How is communication implicated in patient engagement?
Most patients are worried about not receiving all the information they needed. HIgh quality communication and transparency are the foundations of patient engagement.
34
What tends to be the most neglected step in the research process of patient engagement?
Evaluating existing platforms
35
What are 4 examples of exisiting platforms that can be evaluated?
- Social media data
- Online health information
- Online self-asessment/health tracking tools
- In-clinic computerized assessment
36
How do high quality articles compare to low quality articles for online health information?
High quality articles had advice that was harder to do than low quality articles.
37
What are the key takeaways about asking ChatGPT about dementia? (2)
- Dementia information from ChatGPT was accurate and balanced but shallow
- Dementia organizations are superior sources of information about local, specific resources for support
38
What are the criteria for an ethical self-assessment? (7)
- Consent
- Privacy
- Hype
- Anxiety
- Usefulness
- Conflict of interest
- Complementarity
39
What is therapeutic misconception?
The idea that participating in research will lead to better outcomes
40
Why is risk communication important?
Many ppl don't understand risk and often misinterpret graphical displays of risk and associated terminology.
41
How is risk tolerance related to therapeutic misconception?
Can increase therapeutic misconception, depending on how patients balance between risk and magnitude of benefit!
42
Describe the spectrum of consent
None -> Presumed -> Blanket -> *Broad* -> Checklist -> Specific
43
Why do we collect patient exp data?
- Quality improvement
- Accreditation
- Best practices
- Research
- Actual caring
44
What are 4 methods of active capture?
- Questionnaires (good: rapid, broad-reaching; bad: limited richness)
- Interviews (good: in-depth, rich data; bad: resource intense)
- Focus groups (good: group dynamics; bad: group dynamics)
- Events (good: engagement; bad: lack rigor)
45
What are 4 methods of passive capture?
- Internal comms (good: insights in culture; bad: limited patient voice)
- Databases (good: easy to access; bad: not aligned w/ RQ)
- Observations (good: rich data; bad: resource intense)
- Social media (good: abundance of data; bad: challenging analysis)
46
What are 3 qualities of a good survey instrument?
- measures the underlying concept it is intended to tap
- doesn't measure other concepts
- means the same thing to all respondents
47
What are 4 common problems of surveys?
- high readability
- double-barreled questions
- answers that don't match questions
- incomplete answer scales
48
How do psychiatric diagnoses affect accessibility? (3)
- Appropriate medical care/coverage
- Notions of responsibility (eg. criminal)
- Disability claims (for insurance)
49
How do psychiatric diagnoses affect stigma and discrimination? (3)
- Employment and educational opportunities
- Human rights (how to exercise rights w/ diagnosis)
- "Stigma stress" and the right not to know (autonomy)
49
What ethical, legal and social implications do psychiatric diagnoses have? (4)
- Access
- Stigma and discrimination
- Personal values, self-conception
- Role in the community
50
Describe the early classification of psychiatric disorders (4)
- 1952 (DSM-1) Driven by psychiatric needs following WW2
- Dominant psychodynamic and psychoanalytic perspectives (Freud)
- Theory-driven. No in-depth classification schemes
- Organic (brain) vs. functional (mind) disorders (dualism perspective)
51
What are 2 manuals for classifying psychiatric disorders?
- DSM-5-TR: made by APA
- ICD-11: made by WHO
52
Describe the paradigm shift in classification of psychiatric disorders (5)
- 1980 (DSM-3)
- Focus on observable symptoms only! (no subjectivity)
- Disease course over time and outcome, can't link causality (Karl Kahlbaum, 1863)
- Categorical and biological vision of mental health
- Shift away from psychosocial elements
53
What factors drove the classification updates in 1980 for the DSM-3? (3)
- Need for a common language for research and comparing cases
- Consistent nomenclature with International Classification of Diseases (Robert Spitzer)
- Public debate of homosexuality in DSM-2 as a mental "disorder
54
What are some benefits of the DSM classification reforms? (3)
- Clinicians: pragmatic criteria (diagnositc categories + codes), inform treatment, facilitate communication
- Scientific research: operationalization
- Industry: Insurance companies have categorical diagnoses, psychopharmaceutical companies can research drugs for treating specific symptoms
55
What are 5 criticisms of DSM-5?
- Heterogeniety w/in and across diagnostic criteria: same disorder + different symptoms, theoretical inconsistency
- Comorbidity: "Pure" diagnoses in research
- Symptom overlap across diagnoses
- Imply difficulties are caused by disorder: medicalization of psychosocial problems, role of trauma underdeveloped
- Discrete categorical boundaries: arbitrary cutoffs, increases stigma of mental health disorders(?)
56
What are 3 qualities of the DSM-5?
- Atheoretical (no subjectivity)
- Operationalist (observable)
- Categorical (disorders separated discretely)
57
What is the Research Domain Criteria project (RDoC)? (4)
- Alternative to DSM for research
- Underlying mechanisms and dysfunctions (unlike DSM that only looks at observable symptoms)
- Research cutting across the borders of DSM diagnoses
- Developed by National Institute of Mental Health (NIMH)
58
What are 4 qualities of the RDoC?
- Theory-driven
- Dimensional (continuum of typical to atypical)
- Etiology (causation of disease)
- Development, risk, prevention (due to including etiology)
59
What are 6 factors that shape our understanding of psychiatric disorders?
1. Scientific criteria (symptoms, underlying mechanisms, tool for matching patient to treatment)
2. Public opinion/advocacy
3. Social constructions of deviance
4. Political pressure
5. Financial interests
6. Normative assumptions/judgements
60
Describe the differences between normative and descriptive
- Normative: Evaluation of right or wrong, "ought" "should"
- Descriptive: Belief of what "is" or would be
61
What is the Is-Ought Fallacy?
Just becuase it happens doesn't mean it ought to be
62
Describe normative assumptions in classification criteria (2)
- Degrees of socially accepted behaviour: constructs socially expected response or acceptable level, "Normal vs abnormal" behaviour
- Shift in DSM-5 away from individual perspective to perspective of observer: reinforce assumptions about ppl experiencing mental health problems "lacking insight" or capacity
63
What are 5 criteria for capacity?
1. Do they understand?
2. Are they expressing a choice?
3. Are they consistent?
4. Do they appreciate the consequences of the options
5. Can they provide reasons for their choice
64
Describe how capacity is not global
May not have capacity for some decisions, while retaining capacity for others.
65
Describe the factor driving classification needs for the DSM-5 (2013)
- Patient and public input integrated w/ revisions to psychiatric diagnoses and their classification
66
What are 3 benefits of integrating patients into psychiatric classification and research?
- Improve public trust of classification and research
- Counterbalance: fund or implement research tackling questions that the industry would otherwise have no interest in
- Support epistemic justice
67
What are 4 examples of topics in the field of law and neuroscience?
- Questions about formal legal doctrine + courtroom procedure
- Medical-legal questions
- Tech/science regulatory questions
- Political/philosophical questions
68
What are neuro-rights?
Right to cognitive liberty + privacy
69
What are 3 criticisms of the definition if health from WHO?
- Historical context: Disease patterns have changed, Rise of chronic disease
- Who defines disease?: Contributes to medicalization of society, minimizes human capacity to cope
- Meaningful measures: Term "complete" is neither operational nor measurable
70
What are 6 ethical considerations for NE?
- Authenticity
- Coercion
- Distributive justice
- Fairness
- Hubris
- Cognitive liberty
71
What are 3 motivations for pharmacological NE?
- Response to increasing demands of society
- Individual: increase cog performance, less need for sleep
- Society: increased productivity and efficiency
72
What are 3 intersectional considerations of enhancement?
- Gender inequity
- Ableism
- Holistic definitions of enhancement
73
What is the naturalistic fallacy?
What is natural is what's better
74
What is prioritarianism?
Maximizing societal wellbeing by giving priority to those who need resources the most
75
What are 4 ways to access pharmacological enhancement?
- Diversion
- Independent supplier
- Pharmacy
- E-commerce
76
What are 4 examples of neurotech as neuroenhancement?
- Transcranial magnetic stimulation
- Transcranial direct current stimulation
- Repetitive transcranial magnetic stimulation
- Low intensity electric stimulation
77
What are the 4 arguments against drug enhancement in sports?
- The use of drugs in sport is a form of cheating bc it offers an unfair advantage
- The use of drugs in sport is problematic bc of indirect coercion
- The use of drugs in sport are dangerous
- Regardless of the ethical implications of their use, prohibition of drugs in sport is likely to fail
78
What are two components of epistemic injustice?
- Preemptive testimonial injustice: perspectives of patients are not sought even though they are epistemically relevant
- Hermeneutical injustice
NSCI 301
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