Disability and Ethical Triage in Healthcare and Research

What is the Resource Adjusted Probability Ratio (RAPR)?

RAPR = Expected Resource Demand (Estimated duration of treatment/Average duration of treatment)

Who is Alice Wong?

A disability rights activist (1974-2025).

What is Joe Stramondo's critique of triage frameworks?

He argues that frameworks prioritizing quality of life assessments are ableist.

What is the 'Disability Paradox'?

The gap in perception between disabled and non-disabled people's assessment of quality of life.

What does Stramondo argue about survival odds and health?

Survival odds and health are distinct; frameworks that assess quality of life are ableist if they assume disabled people have lower quality of life.

What is the difference between wasting resources and inefficient use of resources?

Wasting resources occurs when using them on patients with low survival odds, while inefficient use involves resource-intensive patients with normal survival odds.

What is the social model of disability?

It suggests that disabilities are not inherently bad but are negative due to social stigmatization and lack of accommodations.

What are the common definitions of disability?

A physical or mental characteristic labeled as impairment or dysfunction, and some personal or social limitation associated with that impairment.

What is the distinction between impairment, disability, and handicap?

Impairment is a loss of physiological structure, disability is a restriction in performing activities, and handicap is a disadvantage resulting from a disability.

What is the medical model of disability?

It supports correcting biological conditions through therapy or surgery.

How does deaf culture challenge traditional views of disability?

Deaf culture emphasizes a rich cultural identity and community, suggesting that deafness can be a cultural identity rather than a disability.

What are QALYs?

Quality Adjusted Life Years, a measure used in resource allocation strategies that considers both the quantity and quality of life saved.

How is the QALY value of a treatment calculated?

Multiply the utility value of the treatment by the number of years gained.

What is the Time Trade Off method in QALY measurement?

It asks if one would prefer to live with a disease for a certain number of years or live in full health for fewer years.

What is the Standard Gamble method in QALY measurement?

It asks if one would prefer to live with a disease for a certain number of years or pursue a perfect cure at a risk of dying.

What is Stramondo's view on resource allocation for disabled individuals?

He believes it is coherent to deprioritize low odds patients without excluding those who require more resources.

What does Stramondo mean by 'ableist frameworks'?

Frameworks that deprioritize specific disability groups based on biased quality of life judgments.

What is the implication of the social model of disability for triage frameworks?

It suggests that disabled individuals have a right to resources needed for equal opportunity in society.

What is the impact of societal perceptions on disabilities?

Disabilities may be perceived negatively based on societal stigma rather than the actual impairment.

How does the medicalization of conditions like shyness affect perceptions of disability?

It can lead to conditions being labeled as impairments, while others, like homosexuality, may be de-medicalized.

What does Stramondo argue about the relationship between impairment and handicap?

He questions whether disabilities are inherently bad or only disadvantageous in certain social contexts.

What is the significance of listening to the testimony of disabled individuals?

It is crucial to understand their lived experiences and perspectives to inform conclusions about disability.

What does QALY stand for?

Quality-Adjusted Life Year

What is a criticism of QALYs?

They are subjective and may overestimate the disutility of a disease state.

How do QALYs favor certain populations?

They favor the young over the old and those whose treatments are cheaper.

What is testimonial injustice?

When a person's testimony is dismissed due to prejudicial attitudes about their social group.

Who argues that disabled bioethicists have a duty to combat testimonial injustice?

Stramondo

What does Stramondo suggest about the perception of disability in bioethics?

It is often presumed that disability is bad for a person rather than an intrinsically neutral trait.

What is the ethical dilemma regarding resource allocation in healthcare?

Should resources be allocated based on survivability odds or efficiency of use?

What is the Millian Harm Principle?

Society has jurisdiction to interfere when a person's conduct prejudicially affects others.

What is the central question regarding vaccine mandates?

When does the state have the right to coercively enforce a vaccine requirement?

What are conditional mandates in the context of vaccine requirements?

Policies requiring vaccination for activities like attending school or keeping a job.

What exemptions exist for vaccine mandates?

Medical or religious exemptions.

What is the libertarian view on government interference?

Individuals have strong rights against interference, and government scope should be limited.

What is the libertarian objection to vaccine mandates?

They argue that the government should not override personal autonomy for public goods.

What is herd immunity?

When enough people have immunity to reduce the infectiousness of a disease.

What is required for herd immunity to be effective?

A significant percentage of the population must be vaccinated or previously infected.

What argument do L'argent and Miller make for justified vaccine mandates?

Vaccines must be available, a public health threat must persist, and safety/efficacy must be communicated.

What was the estimated vaccination rate for COVID-19 herd immunity?

Initially estimated at 70-85%.

What was a major public health threat during winter 2022?

ICUs being full and unable to treat all patients needing emergency care.

What was the vaccine efficacy against severe disease according to meta-analysis?

81% of estimates were greater than 70% over time.

How does vaccine efficacy change over time?

Protection against infection decreases, but protection against severe disease lasts longer.

What is the primary aim of most vaccines?

To prevent severe disease requiring hospitalization.

What is a potential outcome of giving ventilators based on PAPR scores?

Saving more lives but potentially leading to inefficient use of resources.

What is the ethical concern with prioritizing patients based on efficiency of resource use?

It may discriminate against disabled individuals who may require longer treatment.

What is the implication of assuming the quality of life for disabled individuals?

It can lead to objectionable ableism in resource allocation strategies.

What is the role of the state according to libertarianism?

To protect individual rights while allowing some interference to maximize liberty for all.

How do proponents of vaccine mandates justify coercion?

By arguing it prevents harm to others, aligning with the Harm Principle.

What is the distinction between libertarianism and other liberal views on state interference?

Libertarians uniquely argue against coercion for public goods, while others may support it.

What is the ethical consideration regarding the efficiency of ventilator use?

Efficiency may lead to saving fewer lives overall if not managed properly.

What does Stramondo argue about the allocation of resources for disabled individuals?

We should not deprioritize them based on assumptions about their quality of life.

How many COVID-19 vaccines have been administered in the U.S.?

676 million doses

What is the rarest severe side effect of COVID-19 vaccines?

Anaphylaxis, occurring in 5 cases per 1 million doses

What syndrome is a concern for the Johnson & Johnson vaccine?

Guillain-Barré Syndrome

What is the primary purpose of medical research involving human subjects?

To understand the causes, development, and effects of diseases and improve interventions.

What is the difference between research and clinical practice?

Research aims to produce generalizable knowledge, while clinical practice focuses on individualized care.

What is the Therapeutic Misconception?

When a patient confuses participation in research with individualized care.

What historical events raised ethical concerns in human subjects research?

Nazi experiments, Tuskegee Syphilis experiments, American military experiments.

What is the Nuremberg Code?

A set of ethical principles for human experimentation established in 1947, emphasizing informed consent.

What does the Declaration of Helsinki address?

It provides international ethical guidelines for medical research involving human subjects.

What is the Belmont Report?

A report from 1979 outlining ethical principles and guidelines for research involving human subjects.

What are the criteria for justified vaccine mandates according to Largent and Miller?

Vaccine availability, persistent public health threat, evidence of safety and efficacy, and efforts for voluntary vaccination.

What is the significance of the FDA's Emergency Use Authorization (EUA) for COVID-19 vaccines?

It allowed for the rapid approval of vaccines starting December 2020.

What was the outcome of NFIB vs. OSHA in January 2022?

The Supreme Court struck down the OSHA employee mandate for companies with 100+ employees.

What did the Biden vs. Missouri ruling allow?

It allowed a vaccine mandate for workers in federally funded health institutions with exemptions.

What is the role of adaptive trial designs in vaccine research?

They allow for flexibility in trial protocols to improve efficiency and effectiveness.

What is the importance of informed consent in human subjects research?

It ensures that participants are fully aware of the risks and benefits before participating.

What is meant by 'cutting the red tape' in vaccine development?

Streamlining regulatory processes to expedite vaccine approval without compromising safety.

What is the concern regarding long-term safety monitoring of mRNA vaccines?

There is less opportunity for long-term safety monitoring since mRNA vaccines are new.

What is a significant ethical consideration for vulnerable groups in research?

They should receive special protection and research should be conducted on non-vulnerable groups first.

How can research participation be beneficial for individuals?

It provides access to experimental treatments and contributes to data for the population.

What must be respected in research involving animals?

The welfare of animals used in research.

What is required from subjects before participating in research?

Informed consent.

Who can give consent for incapacitated subjects?

A legally authorized representative.

Under what conditions can incapacitated subjects participate in research?

Only if it promotes the health of the group represented by the subject.

What are the three ethical principles outlined in the Belmont Report?

Respect for Persons, Beneficence, and Justice.

What does the principle of Respect for Persons entail?

Individuals should be treated as autonomous agents; those with diminished autonomy deserve protection.

What is the obligation of Beneficence in research?

To maximize benefits and minimize harm.

What does the principle of Justice in research require?

Fair distribution of benefits and burdens of research.

What is the Common Rule?

A set of federal regulations governing research involving human subjects.

What are the four subparts of the Common Rule?

Subpart A (Common Rule), Subpart B (protections for fetuses/neonates), Subpart C (protections for prisoners), Subpart D (protections for children).

What is the role of Institutional Review Boards (IRBs)?

To approve research involving human subjects and ensure ethical standards are met.

What is the purpose of informed consent?

To ensure participants understand the research and voluntarily agree to participate.

What is a double-blind study?

A study in which neither the participants nor the investigators know which treatment the participants are receiving.

What is therapeutic misconception?

When research subjects believe that the primary purpose of a clinical trial is to provide therapeutic benefit rather than to gather data.

What is clinical equipoise?

A state of genuine uncertainty within the expert medical community about the preferred treatment.

What is a placebo?

An inert substance or treatment with no pharmacological effect.

What is the importance of randomization in clinical trials?

To reduce bias in selecting subjects for treatment groups.

What are the phases of clinical trials?

Phase I (safety), Phase II (effectiveness), Phase III (comparison), Phase IV (post-marketing monitoring).

What is a placebo control trial?

A trial where one group receives a placebo while another group receives the active treatment.

What is an active control trial?

A trial where a new treatment is compared to an existing treatment rather than a placebo.

What must be tested against a placebo in clinical trials?

New drugs or treatments to control for the placebo effect.

What is the significance of risk-benefit assessment in research?

To evaluate whether the potential benefits of research outweigh the risks to participants.

What is meant by 'assent' in research ethics?

The agreement of a minor or incapacitated individual to participate in research, when possible.

What is the ethical requirement for subject selection in research?

Fair procedures and attention to vulnerable populations.

What is the primary goal of Institutional Review Boards (IRBs)?

To protect human subjects involved in research.

What is the role of informed consent in research ethics?

To ensure participants are fully informed about the research and its risks before agreeing to participate.

What do Emanuel, Wendler, and Grady argue about informed consent in research?

They argue that the focus on informed consent is misguided and is neither necessary nor sufficient for ethical clinical research.

What are the seven principles necessary for ethical clinical research?

1. Value, 2. Scientific Validity, 3. Fair Subject Selection, 4. Favorable Risk-Benefit Ratio, 5. Independent Review, 6. Informed Consent, 7. Respect for potential and enrolled subjects.

What is the principle of Value in clinical research?

The research must have social or scientific value to avoid wasting resources and exploiting subjects.