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Ani Satz, "Health Care as Eugenics"

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June 1, 2018

Historically and across societies people with disabilities have been stigmatized and excluded from social opportunities on a variety of culturally specific grounds. These justifications include assertions that people with disabilities are biologically defective, less than capable, costly, suffering, or fundamentally inappropriate for social inclusion. Rethinking the idea of disability so as to detach being disabled from inescapable disadvantage has been considered a key to twenty-first century reconstruction of how disablement is best understood.

Such ‘destigmatizing’ has prompted hot contestation about disability. Bioethicists in the ‘destigmatizing’ camp have lined up to present non-normative accounts, ranging from modest to audacious, that characterize disablement as “mere difference” or in other neutral terms. The arguments for their approach range from applications of standards for epistemic justice to insights provided by evolutionary biology. Conversely, other bioethicists vehemently reject such non-normative or “mere difference” accounts, arguing instead for a “bad difference” stance. “Bad difference” proponents contend that our strongest intuitions make us weigh disability negatively. Furthermore, they warn, destigmatizing disability could be dangerous because social support for medical programs that prevent or cure disability is predicated on disability’s being a condition that it is rational to avoid. Construing disability as normatively neutral thus could undermine the premises for resource support, access priorities, and cultural mores on which the practice of medicine depends.

The “mere difference” vs. “bad difference” debate can have serious implications for legal and policy treatment of disability, and shape strategies for allocating and accessing health care. For example, the framing of disability impacts the implementation of the Americans with Disabilities Act, Section 1557 of the Affordable Care Act, and other legal tools designed to address discrimination. The characterization of disability also has health care allocation and accessibility ramifications, such as the treatment of preexisting condition preclusions in health insurance. The aim of this conference was to construct a twenty-first century conception of disablement that resolves the tension about whether being disabled is merely neutral or must be bad, examines and articulates the clinical, philosophical, and practical implications of that determination, and attempts to integrate these conclusions into medical and legal practices.

Learn more: http://petrieflom.law.harvard.edu/events/details/2018-petrie-flom-center-annual-conference

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Ani Satz, "Health Care as Eugenics"

  1. 1. Health Care As Eugenics Ani B. Satz, J.D., Ph.D. Professor of Law, Emory University School of Law Project Leader, Health Law, Policy & Ethics Project Professor of Public Health, Rollins School of Public Health Affiliated Professor, Goizueta Business School Senior Faculty Fellow, Center for EthicsCopyright 2018 Ani B. Satz
  2. 2. Outline 1. Introduction 2. Disability and Eugenics 3. Preventing Disability as Health Care 4. Preventing Disability Through Health Insurance and Other Distribution Metrics 5. Choosing Disability and Ability: Reflections on Health Care and Difference Copyright 2018 Ani B. Satz
  3. 3. 1. Introduction  Philosophical roots of disability as biological impairment and detrimental to one’s opportunities  Parallel development of legal and social structures supporting the provision of health care  Clinical health care practice and health care funding favor methods of normal functioning rather than functional outcomes:  This is so whether disability is illness-related or of other ontology  Assumes atypical functioning is undesired and less effective Copyright 2018 Ani B. Satz
  4. 4. 1. Introduction (Cont.)  This approach to health care raises concerns:  Largely an unreflective or default choice of health policy with enormous impact on lives on individuals wit disabilities who may:  Not be born  Receive normalizing and/or ineffective health care service  Be disadvantaged by health care distribution metrics  Receive services to end but not prolong life  Erroneous health policy:  Avoiding disability does not necessarily equate with an improved health status  Avoiding disability is not necessarily required to supporting human functioning Copyright 2018 Ani B. Satz
  5. 5. 1. Introduction (Cont.) Thesis: The current practice and funding of health care is a form of negative eugenics, which seeks for normalize human functioning and thereby prevent people who functioning in certain ways from existing.  Health care seeks to prevent, ameliorate, or eliminate disability, with to goal of normalizing individuals.  Health care delivery and funding privilege and promote some typical methods of human functioning over equally or more effective atypical methods of functioning, thereby promoting certain human traits.  Because of the extensive role of government funding of health care, the government at least tacitly supports these choices. Copyright 2018 Ani B. Satz
  6. 6. 2. Disability and Eugenics Disability  At the most basic level, disability is an impairment to functioning.  Definitions of disability assume to varying degrees that the origins of disability are biological, social, or a combination.  Defining disability is necessary to define a “normal” level of functioning for determining when:  Medical intervention is appropriate to normalize functioning (strictly biological)  Legal protections begin based on disability (ADA, RA, PPACA) (mixed)  Individuals are eligible for public health insurance or other benefits based on disability (SSI, SSDI) (mixed) Copyright 2018 Ani B. Satz
  7. 7. 2. Disability and Eugenics (Cont.) Eugenics  Sir Francis Galton first used the term in 1883 for “improving human stock” through increased reproduction of genetically fit families (positive eugenics) and decreased reproduction of genetically unfit families (negative eugenics)  Fitness determined in part by biological functioning  Early eugenics movements: individual– and population– levels, state imposed, included sterilization of individuals with disabilities  Modern eugenics: individual or familial, state involvement is indirect Copyright 2018 Ani B. Satz
  8. 8. 2. Disability and Eugenics (Cont.) Health care is eugenic, in the sense that: • Certain traits (associated with normal functioning) are valued; influences the type of people who comprise a given community • Applies to individuals or groups • Appeals to social and legal institutions to support medical practices • Coercive when legal and social institutions force normalization; may be provided or subsidized by the government • May rely on meaningless distinctions made between individuals based on methods of functioning rather than functional outcomes • May be positive and negative • May be direct and indirect Copyright 2018 Ani B. Satz
  9. 9. 2. Disability and Eugenics (Cont.) Health care as eugenics differs from traditional and modern conceptions of eugenics in some ways:  Normalization is a default position rather than a reflective choice (but could become a reflective choice)  Outside the prenatal context, less emphasis on future generations  Occurs throughout the lifecycle rather than only a birth  Functional traits at stake may not be inherited (though some traits in the early eugenics movement were not either, e.g., unemployment, criminality, and some mental illness) Copyright 2018 Ani B. Satz
  10. 10. 3. Preventing Disability as Health Care  Health care seeks to normalize human functioning.  Normalization is assumed or favored in medical school training, the practice of medicine, and by insurance:  In medical school curricula, atypical functioning is viewed as pathology  Health care services try to normalize methods of functioning rather than achieve functional outcomes  Disability is avoided throughout the lifecycle: beginning of life, children, adults, and end of life  Insurance funds normalizing health care services Copyright 2018 Ani B. Satz
  11. 11. Medical School Training  Inherent Assumptions:  Quality of life is inversely proportional to the degree of impairment.  Disability is something to be cured, ameliorated, or prevented through treatment, therapy, or abortion.  E.g., Deafness: medical school courses focus on the etiology, detection, and treatment of hearing loss itself, rather than on broader cultural or communication issues and alternative methods of functioning such as Sign language.  E.g., Some physicians believe that delivering a baby with a disability reflects poorly on their training to make sure both mother and child are “healthy.” Copyright 2018 Ani B. Satz
  12. 12. Practice of Medicine  Role of physicians: Doctors are trusted to decide the definition of “healthy,” who should be aborted, who should be born, and thus what traits are desirable.  Health care services try to normalize methods of functioning rather than achieve functional outcomes.  Disability may be avoided throughout the lifecycle:  Beginning of life—prenatal genetic testing and selective abortion  Medical procedures and biologics for children and adults  End of life decision-making—assisted suicide Copyright 2018 Ani B. Satz
  13. 13. Practice of Medicine (Cont.) Normalizing Health Care Service Alternative (health-related service) Spinal surgery or prosthetic to walk upright Wheeling Spinal surgery for back pain Therapy to strengthen core above normal Early intensive therapy for ASD to normalize behavioral language performance Facilitate alternative behavioral language performance associated with ASD Cochlear implants for Deafness Sign language Conductive education for cerebral palsy Barrier removal Growth hormones for short stature or limb lengthening for achondroplasia Barrier removal Therapy for minor cognitive disabilities Barrier removal/education of others Copyright 2018 Ani B. Satz
  14. 14. Practice of Medicine (Cont.) Normalizing Health Care Service Alternative (social change) Abortion or cosmetic surgery for Down Syndrome Education of others Drug treatment for mild forms of ADHD to normalize school and work performance and eccentric behaviors Education of others Craniofacial surgery for abnormality Education of others Plastic surgery or other correction for aesthetic normalization generally Education of others Intersex surgeries Education of others Copyright 2018 Ani B. Satz
  15. 15. 4. PREVENTING DISABILITY THROUGH HEALTH INSURANCE AND OTHER DISTRIBUTION METRICS  Health insurance and other distribution metrics deprioritize functional outcomes  Normalization is embraced within health insurance structures  Individuals who functioning atypically may be viewed as less healthy and disadvantaged in risk pooling.  Covered health care services seek to normalize individuals within public and private insurance.  An extreme example of favoring individuals who function typically comes from metrics for the distribution of scare resources in public health emergencies, which disadvantage individuals with disabilities Copyright 2018 Ani B. Satz
  16. 16. Metrics in Public Health Emergencies  Stafford Disaster Relief and Emergency Assistance Act § 5151(a) specifically addresses disability, but no state statues address how resources should be rationed.  Grants the President broad power in times of emergency, including issuing regulations for the distribution of supplies and relief assistance “in an equitable and impartial manner, without discrimination on the grounds of . . . age [or] disability.”  State acts based on the Model State Emergency Health Powers Act lack guidance for how to distribute resources.  At least sixteen states address rationing, with only New Hampshire mentioning giving priority to “high risk or critical need groups.” Copyright 2018 Ani B. Satz
  17. 17. Metrics in Public Health Emergencies  Existing health care metrics are used to provide resources to benefit the greatest number.  Supposed to measure objectively health status but may falsely assume those in the best health states survive.  Disadvantages individuals with disabilities that statistically accord with shorter lifespans or are perceived to accompany a lower quality of life. Copyright 2018 Ani B. Satz
  18. 18. Devereaux Triage Adaptation Altevogt et al., IOM, Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations: A Letter Report (2009) Copyright 2018 Ani B. Satz
  19. 19. Ontario Research Project Michael Christian, et. al., Development of a Triage Protocol for Critical Care During an Influenza Pandemic (2006) Copyright 2018 Ani B. Satz
  20. 20. Utah Pandemic Influenza Hospital and ICU Triage Guidelines-Adults Utah Hospitals and Health Systems Association, 2010 Copyright 2018 Ani B. Satz
  21. 21. Hurricane Katrina: Memorial Hospital Sheri Fink, Deadly Choices at Memorial (2009) Sheri Fink, Deadly Choices at Memorial (2009) NPR Copyright 2018 Ani B. Satz
  22. 22. Hurricane Katrina: Memorial (Cont.) Triage Sheri Fink, Deadly Choices at Memorial (2009) Memorial Chapel Sheri Fink, Deadly Choices at Memorial (2009) Emmett Everett & Family Sheri Fink, Deadly Choices at Memorial (2009) Copyright 2018 Ani B. Satz,
  23. 23. 5. CHOOSING DISABILITY AND ABILITY: REFLECTIONS ON HEALTH CARE AND DIFFERENCE  Normalizing functioning in health care devalues alternative and effective modes of functioning; this results in:  Worse health outcomes for some, including death  Less efficiency when functional outcomes are not attained  Normalizing functioning in health care relies on quality of life judgments about disability throughout the lifecycle that may be false.  (Quality of life judgments are moral judgments.) Copyright 2018 Ani B. Satz
  24. 24. Implications for Mere/Detrimental Difference Debate in Bioethics  Detrimental difference devalues atypical and effective methods of functioning.  Skews the sense of how legal and social structures should support impairment  Adaptation need not be harmful to health status or broader well-being.  Preventing or causing harm is not a meaningful metric in situations when all possible interventions involve functional impairment or illness.  Subjectivity of identifying as an individual with a disability does not mean that individuals’ viewpoints are invalid. Biological interpretation is not entirely objective.  There is no “nature of disability”; if you look hard enough, even “normally functioning” individuals may have potentially harmful variations, such as genetic predispositions, aneurysms, etc.  Mutual asymmetry: an individual with a disability may not be able to do everything that someone without a disability can do and vice-versa (e.g., stamina of an individual with bi-polar disorder or advanced cognitive abilities of an individual with Asperger’s).  A detrimental difference approach for biological traits can be stigmatizing and historically gave credence to sterilization efforts. Copyright 2018 Ani B. Satz
  25. 25. Supporting a mere difference approach in health care:  Removing the stigma about disability may mean more people seek medical care, especially for mental disabilities.  A mere difference approach does not mean that preventing or removing disability through health care is unjustified.  A mere difference approach does not mean that causing a disability through health care is permissible. Copyright 2018 Ani B. Satz
  26. 26. Mere Difference Approach Supports Enhancements as Treatments  Use of biological or social enhancements (positive eugenics) for individuals with disabilities that facilitate atypical methods of functioning  Focusing on functional outcomes raises the questions of: (1) the role of technology affecting functioning throughout a lifetime, and (2) the value of enhancements for individuals with disabilities.  High technology health care may assist individuals with disabilities who function atypically.  E.g., strengthening one’s core to address lower back problems, increasing capillary formation to bypass a blocked artery Copyright 2018 Ani B. Satz

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