Final Flashcards
What are additional concepts of the principles of ethics (other than Autonomy, Beneficence, Nonmaleficence, Justice) (6)
- Privacy
- Values and Priorities NEW
- Informed Choice
- Dignity
- Confidentiality
- Respect for Persons
What are the examples of concepts important for the values and priorities aspect of ethics related to spinal cord injury (SCI)? (7)
- Relationality: Importance of support from peers, family and health care workers for well being
- Access: Importance of accessible support and services
- Identity: Impact of SCI on roles in society
- Intersectionality: Variety of factors intersect to affect the experience of SCI
- Knowledge: Importance of accessible information and education about SCI affects a person’s experience
- Divergent values: Diverse and potentially conflicting priorities between patient and care-providers in care and rehab
- Independence: Ability to fulfill aspects of daily living and self-management without external aid
What are 8 aspects to consider in the ethics of clinical research?
- Voluntariness (no coercion)
- Informed Consent
- Right to withdraw
- Confidentiality
- Accessibility
- Values and priorities
- Follow-up (ensuring no adverse events + continued benefits)
- Safety
What are 4 facts about spinal cord injury?
- 250,000-500,00 cases each year
- $1.5 - 5 million lifetime cost in NA
- Increasing incidence in resource- restricted nations
- Aging demographics due to slips and falls
What are 3 types of spinal cord injury?
- Cervical (quadriplegia: all 4 limbs affected) (60% of SCI are at the neck)
- Thoracic (paraplegia)
- Lumbar (paraplegia) (most function)
What are 10 consequences of spinal cord injury?
- Paralysis - Loss of motor and sensory function
- Loss of control over bowel and bladder function
- Pain
- Susceptibility to infection
- Affects other physiological functions
- Loss of independence
- Limited employment opportunities
- Altered purpose/meaning of life
- Personal and financial burden on individual and caregiver
- Societal cost ~$2.7 billion (2013) in Canada
What are the 3 stages of the pathophysiology of SCI?
- Acute (injury ~2 days)
- Intermediate (injury <6 months)
- Chronic (injury >6 months)
What are the 4 stages of clinical trials?
- Safety (Safest tolerable dose, side effects, small population)
- Efficacy (Most effective dose, outcome measures. larger population)
- Confirmation (Compare to other treatments, adverse events, control group) - most trials don’t make it to this stage
- Follow-up (Market)
What are 3 reasons for failing a clinical trial?
- Financial: 100s of millions to billions of $
- Enrollment: Small population, strict criteria
- Low power (Insignificant results): Poor design, single site
What are 4 reasons to stop a clinical trial?
- Safety: adverse events
- Poor study design: low enrollment
- Efficacy: insignificant results
- Commercial reasons
What are 4 reasons to stop a clinical trial DUE TO COMMERICAL REASONS?
- Research budgets shrink
- Competitive products emerge
(that are more promising) - Supply failures (raw materials difficult to source)
- Pressures to end unproductive programs
What are 5 interventions for SCI, and what do they focus on?
- Drugs (Minocycline): Inflammation, Pain, Axon health
- Stem cells (ES, MSC, iPSC): Inflammation, Regeneration, Cell replacement
- Devices (Exoskeletons): Movement, Pain, Physical support
- Biomaterial (Bridges): Regeneration
- Surgical (Decompression): Limit damage, Relieve pressure, Nerve grafts
What are 4 safety concerns regarding the use of stem cells for SCI treatment?
- Source of cells
- Invasiveness
- Tumours (BIGGEST CHALLENGE)
- Lack of follow-up protocols
How do values and priorities change in regards to risk tolerance depending to the type of SCI?
- Chronic, cervical SCI: More risk averse
- Chronic, thoracic SCI: High tolerance to risk
What is the case study of the Geron Trial?
Geron was a company researching stem cell treatment. They ended up halting their first clinical trial because they decided to put financial gain before the patients. By making this decision, they destroyed trust.
What is medical tourism (in the context of stem cells)?
Travelling for stem cell treatment
What are 3 features, 3 examples, and 1 ethical issue regarding biomaterials?
Features:
- Biologically compatible
- Scaffold (for axon regen)
- Support stem cells (viability)
Examples:
- Collagen
- Fibrin
- Matrigel
Ethical Issues:
- Safety
What are 2 pros and 3 cons (regarding safety) of the INSPIRE TRIAL for SCI treatment?
Pros:
- Scaffold support for stem cell therapy
- Deliver combination treatments (slow releasing drugs, nanoparticles)
Cons:
- Safety: Invasive (cutting open spinal cord), Potentially requires a second surgery (due to decompress surgery), Worsens SCI
What are 3 features, 3 examples and 2 ethical issues regarding devices for SCI treatment?
Features:
- Support mobility
- Reduce pain
- Aids rehab
Examples:
- BCI (Neuralink)
- Exoskeletons
- Electrical stimulation (axon regen)
Ethical Issues:
- Safety
- Access
What are 3 costs to general society when clinical trials fail?
- Trial participants are abandoned: Violates the risk-benefit contract between patients and sponsors
- Loss of knowledge: Loss of public trust, scientific community
- Healthcare does not progress efficiently: Tax funded research doesn’t translate to societal benefits
What is a robot, and what is a social robot?
Robot: Cyber-physical system with sensors, actuators and mobility
Social robot: Robot that interacts with people
What are potential benefits of social robots on improving mental health outcomes in older adults? (5, with 1 caveat)
- Decrease in loneliness
- Decrease in anxiety
- Increased medication adherence
- Possibly lower need for neuropsychiatric medication in people living with advanced dementia (lower sedative drug use)
- Improved quality of life
CAVEAT: - Quality of evidence is low-medium due to low sample size and time span
What are potential benefits of social robots on improving mental health outcomes in children? (4, with 1 caveat)
- Improved social and communication skills of children on the autism spectrum
- Relief of acute stress and anxiety
- Decrease in depressive symptoms
- Decrease in acute distress
CAVEAT: - Quality of evidence is low, lower than adult studies
What are Asimov’s 3 Laws of Robotics (1950)?
- A robot may not injure a human being or, through inaction, allow a human being to come to harm.
- A robot must obey the orders given it by human beings except where such orders would conflict with the first law.
- A robot must protect its own existence as long as such protection does not conflict with the first or second law.
What are the 5 Principles of Robotics by Margaret Boden (2017)?
- Robots should not be designed as weapons except for national security reasons.
- Robots should be designed and operated to comply with existing law, including privacy.
- Robots are products, as with other products they should be designed to be safe and secure.
- Robots are manufactured artefacts: the illusion of emotions and intent should not be used to exploit vulnerable users.
- It should be possible to find out who is responsible for any robot.
What is the computers are social actors paradigm?
Human-Computer interaction is inherently social and many human-human interaction phenomena extend to interactions with computers. (Computers don’t need to behave like humans to elicit emotional responses, social robots compound these effects)
What is the definition of privacy?
Claim of individuals, groups, or institutions to determine for themselves, when, how, and to what extent information about them is communicated to others.
What is the privacy paradox?
While many technology users report privacy concerns, not many take actions to protect their privacy.
What are 3 reasons for the privacy paradox?
- Willing to exchange personal data for services
- Lack of understanding (fallacy of privacy self-management: users are not equipped to manage)
- Surveillance capitalism: large companies will have access anyway, becoming apathetic to taking action
What are 4 dimensions of privacy?
- Physical
- Psychological
- Social
- Informational (most researched)
What are 5 informational privacy considerations in regards to social robots?
- Capacity of social robots for data collection (including emotions, mental states, personality)
- Third-party access to data
- Hacking
- Collecting information about third parties
- Lack of user understanding
What are 3 psychological privacy considerations?
- Psychological dependence (may affect relationships with real people)
- Reduced self-reflection and autonomy (prevent feeling of being alone, can prevent self-development)
- Vulnerable user groups
What is a social privacy consideration?
Social bonding between the robot and user; affection and trust can lead to the revelation of secrets (unidirectional)
What are 2 physical privacy considerations?
- Access to private rooms
- Uncomfortable closeness
What are 7 aspects to the potential solution of implementing privacy by design?
- Proactive not reactive; preventive not remedial
- Privacy as the default setting
- Privacy embedded into design
- Full functionality - positive-sum, not zero-sum
- End-to-end security - full lifecycle protection
- Visibility and transparency - keep it open
- Respect for user privacy - keep it user-centric
What are the 5 features of big data?
- Volume: number of data points
- Variety: data may cross different types (structured/unstructured)
- Velocity: pace of data generation
- Veracity: data quality and accuracy
- Value: potential to create benefits and insights
What are 4 qualities that make personal digital data ‘sticky’ (and hard to regulate)?
- Mundane - describe everyday activities
- Linked - can bridge contexts
- Forever - difficult to verify deletion
- Co-created - data collector + data source
Describe the analytic landscape of health data in BC (4)
- Redundancy
- Lack of coordination (some structures communicate, others don’t)
- Inconsistency in practices, transparency, security (ethical and logistical issue)
- Inefficient processes for access and approvals (really slow!)
Using the 5 characteristics of Big Data, describe Big Data in (brain) health
Volume: data from Electronic Health Records, imaging, health apps, sequencing all large
Variety: many kinds of data with different structures
Velocity: data vary in speed of collection/generation
Veracity: data quality vary based across devices, missing values, bias
Value: depends on question being asked
What is the definition of Artificial Intelligence?
Artificial systems that appear to think like humans (decide, categorize, recognize…)
What is machine learning?
Systems that can learn from experience or data without direct human programming
What are 2 types of machine learning (and describe them)?
- Supervised learning: models are trained on known, labelled data. Requires huge volume of data and human labor.
- Unsupervised learning: models learn from unlabeled data. Requires huge processing power.
What are 5 applications of AI in neuroscience?
- Risk prediction
- Clinical decision-making
- Neurotech
- Brain modelling
- Diagnosis & prognostication
What is culpability and how is AI in neuroscience related?
Responsibility based on intention, knowledge, or control
- AI introduces potential harms no one person could predict or prevent
- if a neurosurgery robot makes an error, who is culpable?
What is moral accountability and how is AI in neuroscience related?
Duty to explain one’s reasons and actions to others
- AI processes may be unexplainable to their users
- the doctor can not explain AI-assisted diagnosis