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Marie-Eve Lemoine, "Mere Difference and Chloe’s Law: Redefining the Scope of Prenatal Testing Conversations?"

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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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Marie-Eve Lemoine, "Mere Difference and Chloe’s Law: Redefining the Scope of Prenatal Testing Conversations?"

  1. 1. Mere Difference and Chloe’s Law: Redefining the Scope of Prenatal Testing Conversations? Marie-Eve Lemoine, BSc.PT., MA, PhD(c) | Vardit Ravitsky, PhD 2018 Petrie-Flom Center Annual Conference: Beyond Disadvantage: Disability, Law, and Bioethics
  2. 2. “The CDSS defines Down syndrome as a naturally occurring chromosomal arrangement that has always been a part of the human condition, seeing it as neither a disease nor a negative medical outcome of pregnancy. Down syndrome, in and of itself, does not require screening, treatment, or cure. The chromosomal arrangements that result in the Down syndrome phenotype are neither good nor bad per se and are given a value only through the social constructs, knowledge base, and belief systems that surround Down syndrome. Down syndrome is not a birth defect or an illness. A person with extra genetic material from the 21st chromosome may, however, be predisposed to certain illnesses and medical conditions that are also present in the general population. Extra genetic material from the 21st chromosome may also provide protection against other illnesses and medical conditions, such as solid tumours2”. Grant and Flint 2007, p. 580 From the Canadian Down Syndrome Society (CDSS):
  3. 3. http://www.doctortipster.com/3349-down-syndrome-mongolism-or-trisomy-21.html
  4. 4. Chloe’s Law (Down Syndrome Information and Awareness Act) 2008 Kennedy-Brownback Act: Prenatally and Postnatally Diagnosed Conditions Awareness Act 2014 Chloe’s Law: Down Syndrome Prenatal And Postnatal Education Act
  5. 5. Presentation outline 1. Down syndrome as mere-difference? 2. Empirical data 3. Chloe’s Law and critics
  6. 6. Down syndrome as mere-difference? ■ Correlates of lifes that are good – Passionate projects – Close/caring relationships – Community involvement, – Facing achievable challenges, – Being safe, warm, dry
  7. 7. ■ Cornucopias of available engagements for a good live Down syndrome as mere-difference? Stoner, 2016
  8. 8. Down syndrome as mere-difference? w Little w – worse off ■ Transient states of dissatisfaction, pain, discomfort, etc… ■ Stable ■ Plentiful cornucopia, albeit different or smaller ■ Attainment of correlates of good life DS as bad-difference W Big W – Worse off ■ Significant pain/suffering, significantly reduced life expectancy ■ Degenerative process ■ Cornucopia empty or almost empty ■ Inhability to attain the correlates of a good life DS as mere-difference Stoner, 2016
  9. 9. Down syndrome as mere-difference? Possible shortcomings 1. Significance of decreased life expectancy 2. Significance of associated medical complications 3. Real life application for prenatal testing decisions - Productivity/competitivity as correlates of a good life? - Expecting couples do compare - Expecting couples do consider social circumstances
  10. 10. Philosophy Empiricism Evidence-based information
  11. 11. Evidence-based information Quality of life - Quantitative - Biomedical paradigm - Neutral to negative findings - Negative biases? Life experience - Qualitative - Disability paradigm - Neutral to positive findings - Positive biases?
  12. 12. Advocacy arguments Living with DS/caring for someone is a more positive experience than poeple think. Living with DS/caring for someone needs not be a negative experience.
  13. 13. Chloe’s Law (Down Syndrome Information and Awareness Act) 2008 Kennedy-Brownback Act: Prenatally and Postnatally Diagnosed Conditions Awareness Act 2014 Chloe’s Law: Down Syndrome Prenatal And Postnatal Education Act (Down Syndrome Information And Awareness Act)
  14. 14. Chloe’s Law (Down Syndrome Information and Awareness Act) (a) General rule.--The department shall make the following available to health care practitioners on the department's publicly accessible Internet website: (1) Up-to-date, evidence-based information about Down syndrome that has been reviewed by medical experts and national Down syndrome organizations. The information provided shall include the following: (i) Physical, developmental, educational and psychosocial outcomes. (ii) Life expectancy. (iii) Clinical course. (iv) Intellectual and functional development. (v) Treatment options. (vi) Any other information the department deems necessary. (2) Contact information regarding First Call programs and support services, including the following: […] (Italics added - Pub. L. 2450, No. 130, Cl. 35)
  15. 15. Chloe’s Law (Down Syndrome Information and Awareness Act)
  16. 16. Does mandating a « positive spin » threaten neutrality?  Enforces commitment to already established best-practice guidelines  Evidence of non-compliance to guidelines leading to  Insufficient information  [Overly] negative depiction  Pressure on women to use testing and terminate affected pregnancies  Documented misconceptions Mandating a positive-neutral spin is meant to improve neutrality
  17. 17. Conclusion Philosophical limits Individual/social context Relevance of DSIA
  18. 18. Acknowledgements
  19. 19. Evidence-based information Quality of life - Quantitative - Biomedical paradigm - Neutral to negative findings - Negative biases? Life experience - Qualitative - Disability paradigm - Neutral to positive findings - Positive biases?
  20. 20. Bad-difference/Mere-difference ■ Bad-difference view: Disability is inherently bad with regards to well- being – I.e. it would still be bad in a fully fair and accomodating society ■ Mere-difference view: Disability is inherently neutral with regards to well-being – I.e. in a fully fair and accomodating society, it would not make one « worse-off » – Disability as value-neutral
  21. 21. « Positive » information Preconceptions and Expectations Neutral valence (?)
  22. 22. https://medical- dictionary.thefreedictionary.com/down+syndrome
  23. 23. What About « Value-neutrality »? The fact-value distinction in Prenatal testing - Testing ‣ reason to avoid the condition - Subjectivity in risk perception - Values: explicited Vs assumed Value neutrality: Unattained Unattainable Need for new models with value sharing What values are to be shared? Rentmeester, 2001
  24. 24. DSIA – The critics Mandates « only » positive information Mandates a positive spin Is contrary to neutrality and value neutrality in counseling Is motivated by high abortion rates
  25. 25. On mandating a positive spin… Negative Neutral Positive - Lack of treatment - Equal amount of positive and negative - ↑ Treatments - ↓ Life expectancy - ↑ Life expectancy - Developmental delay - Educational outcomes - Med. complications - Similar>Different - ↓ Quality of life - Social participation - Negative value terms: defect, problem, risk, abnormality, handicap, diagnosis - Neutral value terms: difference, condition, characteristic, chance, probability, determination - Services/support - Medical advances - Social advances Bryant et al. 2001, Lawson et al. 2012
  26. 26. (a) General rule.--The department shall make the following available to health care practitioners on the department's publicly accessible Internet website: (1) Up-to-date, evidence-based information about Down syndrome that has been reviewed by medical experts and national Down syndrome organizations. The information provided shall include the following: (i) Physical, developmental, educational and psychosocial outcomes. (ii) Life expectancy. (iii) Clinical course. (iv) Intellectual and functional development. (v) Treatment options. (vi) Any other information the department deems necessary. (2) Contact information regarding First Call programs and support services, including the following: […] (Italics added - Pub. L. 2450, No. 130, Cl. 35)
  27. 27. (a) General rule.--The department shall make the following available to health care practitioners on the department's publicly accessible Internet website: (1) Up-to-date, evidence-based information about Down syndrome that has been reviewed by medical experts and national Down syndrome organizations. The information provided shall include the following: (i) Physical, developmental, educational and psychosocial outcomes. (ii) Life expectancy. (iii) Clinical course. (iv) Intellectual and functional development. (v) Treatment options. (vi) Any other information the department deems necessary. (2) Contact information regarding First Call programs and support services, including the following: […] (Italics added - Pub. L. 2450, No. 130, Cl. 35) On mandating [only?] positive information
  28. 28. https://publications.parliament.uk/pa/bills/lbill/2017-2019/0051/18051.pdf
  29. 29. Yes, the DSIA does mandate [positive to neutral] info about DS So it is contrary to neutrality! …

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