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

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

3. “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):

4. http://www.doctortipster.com/3349-down-syndrome-mongolism-or-trisomy-21.html

5. 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

6. Presentation outline
1. Down syndrome as mere-difference?
2. Empirical data
3. Chloe’s Law and critics

7. 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

8. ■ Cornucopias of available engagements for a good live
Down syndrome as mere-difference?
Stoner, 2016

9. 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

10. 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

11. Philosophy Empiricism
Evidence-based information

12. 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?

13. 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.

14. 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)

15. 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)

16. Chloe’s Law (Down Syndrome Information and Awareness Act)

17. 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

18. Conclusion
Philosophical limits
Individual/social context
Relevance of DSIA

19. Acknowledgements

20. 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?

22. 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

23. « Positive »
information
Preconceptions
and Expectations
Neutral valence (?)

24. https://medical-
dictionary.thefreedictionary.com/down+syndrome

25. 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

26. 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

27. 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

28. (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)

29. (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

30. https://publications.parliament.uk/pa/bills/lbill/2017-2019/0051/18051.pdf

31. Yes, the DSIA does mandate
[positive to neutral] info about DS
So it is contrary to neutrality!
…