1) Health care aims to normalize human functioning and prevent disability, viewing atypical functioning as inferior. This amounts to a form of negative eugenics. 2) Medical training, practice, and insurance prioritize normalizing treatments over functional outcomes, seeking to avoid disability throughout life. 3) Metrics used to distribute scarce health resources, like in public health emergencies, disadvantage those with disabilities by falsely assuming typical functioning indicates better health. 4) Viewing disability as a mere difference rather than something inherently detrimental supports individuals' choice in functioning atypically and receiving enhancements to do so effectively.

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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. Utah Pandemic Influenza Hospital and
ICU Triage Guidelines-Adults
Utah Hospitals and Health Systems
Association, 2010
Copyright 2018 Ani B. Satz

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. 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. 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. 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. 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. 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