- In Pursuit of Justice for Disability: Model Neutrality Revisited
- Theoretical Strategies to Define Disability
- Disability, Health, and Difference
- Habilitative Health and Disability
- Philosophy and the Apparatus of Disability
- Disability Liberation Theology
- Disabilities and Well-Being: The Bad and the Neutral
- Causing Disability, Causing Non-Disability: What’s the Moral Difference?
- Why Inflicting Disability is Wrong: The Mere-Difference View and the Causation-Based Objection
- Evaluative Diversity and the (Ir)Relevance of Well-Being
- Contractualism, Disability, and Inclusion
- Civic Republican Disability Justice
- Disability and Disadvantage in the Capabilities Approach
- Disability and Partial Compliance Theory
- Fair Difference of Opportunity
- The Disability Case Against Assisted Dying
- Epistemic Exclusion, Injustice, and Disability
- What’s Wrong with “You Say You’re Happy, but … ” Reasoning?
- Interactions with Delusional Others: Reflections on Epistemic Failures and Virtues
- Disability, Rationality, and Justice: Disambiguating Adaptive Preferences
- Ideals of Appreciation and Expressions of Respect
- The Limiting Role of Respect
- Respect, Identification, and Profound Cognitive Impairment
- Care and Disability: Friends or Foes
- A Dignitarian Approach to Disability: From Moral Status to Social Status
- Cognitive Disability and Moral Status
- Dignity, Respect, and Cognitive Disability
- On Moral Status and Intellectual Disability: Challenging and Expanding the Debates
- Neurodiversity, Autism, and Psychiatric Disability: The Harmful Dysfunction Perspective
- Educational Justice for Students with Intellectual Disabilities
- A Symmetrical View of Disability and Enhancement
- Cognitive Disability and Embodied, Extended Minds
- The Visible and the Invisible: Disability, Assistive Technology, and Stigma
- Neurotechnologies and Justice by, with, and for Disabled People
- Second Thoughts on Enhancement and Disability
- Cost-Effectiveness Analysis and Disability Discrimination
- Prioritization and Parity: Which Disabled Newborn Infants Should Be Candidates for Scarce Life-Saving Treatment?
- Why People with Cognitive Disabilities Are Justified in Feeling Disquieted by Prenatal Testing and Selective Termination
- Reproductive Choice in Context: Avoiding Excess and Deficiency?
- Bioethics, Disability, and Selective Reproductive Technology: Taking Intersectionality Seriously
- Procreation and Intellectual Disability: A Kantian Approach
- Parental Autonomy, Children with Disabilities, and Horizontal Identities
- Beyond Instrumental Value: Respecting The Will of Others and Deciding On Their Behalf
Abstract and Keywords
This chapter explores the ethical responsibilities of those who make medical decisions on behalf of individuals with intellectual and/or developmental disabilities that result in lifelong decisional incapacity. Standard accounts argue that because these patients have never had the capacity to make their own decisions, surrogates should make decisions based solely on what best promotes the patients’ welfare. On such accounts, the preferences, values, and decisions of those with impaired consent capacity are still relevant to decision making but only instrumentally: to the extent that soliciting them is conducive to or can provide an indicator of the patients’ general interests. Such accounts fail to ensure that such patients are properly respected. Rather than emphasize the importance of respect for autonomy, this chapter explores the more inclusive question of how decision making can be done in a way that does not insult the existent agential capacities of individuals. Trustees need to recognize that a patient’s unique evaluative perspective possesses intrinsic normative significance, and giving moral weight to their preferences, values, and decisions provides a way to respect that perspective.
Dana Howard is a philosopher at the Ohio State University Center for Bioethics, which is housed in the OSU Wexner Medical Center and the College of Medicine. She is also a member of the OSU Philosophy Department. She was a post-doctoral fellow in the Clinical Center Department of Bioethics at the National Institutes of Health and completed her PhD in Philosophy at Brown University.
David Wendler is a senior investigator and Head of the Section on Research Ethics in the Department of Bioethics at the NIH Clinical Center. He is a philosopher trained in the philosophy of science, and metaphysics and epistemology. Dr. Wendler is an attending on the Bioethics Consultation service and has served as a consultant to numerous organizations, including the Institute of Medicine, the World Health Organization, and the World Medical Association.
Access to the complete content on Oxford Handbooks Online requires a subscription or purchase. Public users are able to search the site and view the abstracts and keywords for each book and chapter without a subscription.
If you have purchased a print title that contains an access token, please see the token for information about how to register your code.