Bioethics and Transhumanism Notes

Overview from Lecture 8

• Quality of Life & Disability: Amundson discusses the concepts of quality of life, biological normality, and species typicality, as well as objections to normal function views of health.
• Key Distinctions:
  • Impairment vs. Disability vs. Handicap (ICIDH)
  • Treatment vs. Enhancement:
  • Treatment: Aimed at curing or improving a medical condition (e.g., surgical, chemical treatments).
  • Pre-emptive Treatment: Preventative measures taken to avoid the development of diseases.
  • Enhancement: Improves abilities beyond normal functioning, often a more controversial area lacking clear medical standards.
• Public Health Care Obligations: Treatment seen as a means of restoring individuals to a state of normalcy, addressing inequalities from natural accidents of birth.

Health Care Obligations by Norman Daniels

• Daniels argues that we are obliged to ensure others can achieve normal functioning, but not to provide enhancements for aesthetic or personal satisfaction.
• This distinction informs health care policy and coverage across various national systems, prioritizing treatments that restore normal function.

The Idea of Normal Opportunity & Quality of Life

• Quality of life is closely related to access to normal opportunities, suggesting that limited access leads to lower quality of life for individuals with disabilities.
• Amundson's Anomaly: Many individuals with disabilities report high quality of life, challenging common assumptions.
• Relevant Literature: Barker & Wilson (2019) and Hiller (2023) explore the relationship between disability and well-being.

Health Status Index (HSI) and Mobility

• The HSI may fail to account for environmental and contextual factors affecting individuals' actual mobility.
• Example: Three triplet sisters with paraplegia living in different environments face varying levels of accessibility, illustrating that HSI does not measure individual capability but instead highlights broader systemic issues.

Concepts of Disability, Disorder, and Disease

• Definitions:
  • Impairment: Functioning below normal levels.
  • Disability: Associated limitations that arise from impairments.
  • Handicap: Societal barriers faced by individuals with disabilities.
• The influence of terminologies on perceptions of conditions and the role of societal factors.

Normative vs. Empirical Distinctions in Disability

• Empirical: Descriptive inquiries about how things are (e.g., definitions of disability).
• Normative: Prescriptive views about how things should be (e.g., ethical considerations and judgments about disabilities).

Illness and Disease

• Disease: Characterized by biological abnormalities that disrupt normal bodily functioning.
  • Can be external pathogens or internal dysfunction, negatively impacting health.
• Criteria of Disease:
  • Biologically or physiologically based disruptions to normal functioning.
  • Conditions needing medical treatment or attention, indicative of societal interpretations of health.

The Nature of Disease

• Catchiness: A feature of diseases that allows them to spread or persist, can be understood through:
  • Horizontal: Direct transmission (e.g., viruses).
  • Vertical: Intergenerational (e.g., genetic disorders).

Perspectives in Bioethics and Philosophy of Disability

• Bioethics:
  • Focuses on biomedical issues, evaluating life and death decisions in normative frameworks (e.g., Kantian, utilitarian).
• Philosophy of Disability:
  • Examines conceptualizations of disability, including ableism, societal inclusion, and lived experiences of disabilities.

Health as Normal Functioning

• Theories equating health with normality rooted in factualism about health, positing that diseases and disabilities are deviations from a norm.
• Critique of Normal Functioning Views: Elizabeth Barnes challenges traditional definitions citing the counterfactual problem, encouraging a more nuanced understanding of health and disability relations.

Theoretical Approaches to Health

• Factualist Views:
  • Boorsean Theory: Causal roles and statistical typicality of normal functioning.
  • Hausman's Benchmark Environment: Contextualizes normal function within historical common environments.
• Normative Theories of Health:
  • WHO's definition as a state of total well-being.
  • Capability views emphasize the range of abilities conducive to agential action.

Suggested Readings for Deeper Understanding

• Aas, S. (2022) on disability definitions in health contexts.
• Barnes, E. on the intersection of disability and health.
• Boorse, C. discussing health as a theoretical construct.
• Hausman, D. on health and functional efficiency.
• Wakefield, J. on biostatistical vs. harmful dysfunction theories.