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Disability, Biotechnology, and the Right to Exist

Disability, Biotechnology, and the Right to Exist. Disabilities Health Research Network Kelowna January 29, 2010 TIM STAINTON University Of British Columbia. ?. “OLD EUGENICS”.

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Disability, Biotechnology, and the Right to Exist

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  1. Disability, Biotechnology,and the Right to Exist Disabilities Health Research Network Kelowna January 29, 2010 TIM STAINTON University Of British Columbia

  2. ?

  3. “OLD EUGENICS” • Sir Francis Galton (1822-1911) assisted by Karl Pearson began in the mid 1860's to put forward the view that all characteristics were hereditable, including physical and mental capacity. • Eugenics (Greek=wellborn) : "the study of agencies under social control that may improve or impair the racial qualities of future generations either physically or mentally“

  4. The Eugenics Movement In 1895, Lord Herschell, speaking at the founding of the National Association for Promoting the Welfare of the Feeble-Minded moved a resolution affirming that: The existence of large classes of feeble-minded persons is a danger to the moral and physical welfare of society and calls for immediate attention both on the part of public authorities and charitable enterprise. (The Times, 1898)

  5. H.H.Goddard (1866-1957) • Director of the first psychological research laboratory for the study of mental deficiency at the Vineland Training School in the U.S.. • For many generations we have recognized and pitied the idiot. Of late we have recognized a higher type of defective, the moron, and have discovered he is a burden...a menace to society and civilization, that he is responsible in large measure, for many, if not all, our social problems...

  6. FOUR EUGENIC STRATEGIES • Marriage Regulation • Sterilization • Incarceration • Elimination

  7. By 1933 both Alberta and British Columbia had eugenic sterilization laws. • Winston Churchill, Home Secretary from February 1910 to October 1911. He warned Asquith of "a very terrible danger to the race" and that until the public came to accept sterilization, that segregation from the community and between the sexes was required.

  8. Eugenics Apogee • [The State] must see to it that only the healthy beget children;...It must declare unfit for propagation all who are visibly sick or who have inherited a disease and can therefore pass it on,...Those who are physically and mentally unhealthy and unworthy must not perpetuate their suffering in the body of their children....A prevention of the faculty and opportunity to procreate on the part of the physically degenerate and mentally sick, ...would not only free humanity from immeasurable misfortune, but would lead to a recovery which today seems scarcely considerable.

  9. NEW EUGENICS • Critics of the use of these new technologies argue that essentially our eugenic choices are moved back to a ‘pre-birth’ period, but are still eugenic decisions • Proponents argue the new technology does not represent a new eugenics as there is no state coercion but simply expanded information for individual choice

  10. WHAT EXACTLY ARE WE TALKING ABOUT?

  11. PRE-NATAL TESTING • TESTING FOR A RANGE OF ‘DEFECTS’ • DOWN’S SYNDROME, TAY SACHS, SPINA BIFIDA, CYSTIC FYBROSIS (APX. 170-80 ‘DEFECTS’ CAN BE TESTED FOR)

  12. TYPES OF TEST • NON-INVASIVE-LOW RISK-PREDICTIVE • ULTRASOUND • Soft Markers • Nuchal Translucency Screening • Must be done between 11 and 14 weeks • NT scan alone will detect about 70 to 80 percent of babies with Down syndrome. 5 percent false-positive rate

  13. MATERNAL SERUM SCREENING (MSS) • MATERNAL AGE • New protocols increasingly use a combination of all three • The detection rate for the first-trimester combined screening ranges from 79 to 90 percent. • New non-invasive tests coming to market with very high accuracy rates

  14. GENETIC • INVASIVE-HIGH RISK OF SPONTANEOUS ABORTION (1:200-400) • HIGHLY ACCURATE • CHORIONIC VILLUS SAMPLING(CVS) • AMNIOCENTESIS

  15. WHO IS TESTED • Normally women over 35 • “High Risk” • Movement toward earlier/universal testing (Manitoba & Ontario, COGC) • Funded through Provincial Health Services

  16. REASONS FOR TESTING • TO ASSIST PARENTS IN PLANNING • TO DECIDE WHETHER TO TERMINATE A PREGNANCY • NO THERAPEUTIC INTERVENTIONS ARE PRESENTLY AVAILABLE

  17. PRE-IMPLANTATION GENETIC DIAGNOSIS (PGD) • USED IN CONJUNCTION WITH IVF TO SELECT WHICH EMBRYOS • ALLOWS FOR SELECTION OF A BROAD RANGE OF CHARACTERISTICS • CURRENTLY NOT WIDESPREAD IN CANADA

  18. REGULATION • Assisted Human Reproduction Act • Regulates prohibited and controlled activities regarding selection and embryonic manipulation • Prohibited activities include cloning and sex selection up to 8 weeks • Exception for prevention, diagnosis and treatment of sex related disorders

  19. US research showed a 15% decrease in births of babies with Down syndrome between 1989 and 2005. In the absence of prenatal testing, researchers would anticipated a 34% increase in births - due to the trend of women waiting longer to have children (Skotko, 2009). • US estimates are about 90 percent of women who learn they are carrying a child with down syndrome choose to end their pregnancies.

  20. Easier testing will increase the number of terminations • Very real prospect of eliminating Downs syndrome and other testable condition such as spina bifida

  21. WHAT ARE THE ARGUMENTS THAT ARE USED TO SUPPORT THE ELIMINATION OF PEOPLE WITH DISABILITIES?

  22. MORAL STATUS AND PERSONHOOD • The dominant premise in western thought from Classical times to the present is that to be accorded moral status (or political status) one must be a ‘rational’ being. (Persons-Human distinction) • human beings who look and are physically constructed like men...are only marginally or by a sort of prudent and humane courtesy fully human beings (Quinton)

  23. DOES RATIONALITY DETERMINE MORAL STATUS? • Rationality or intelligence is not a fixed or static concept • If level is important then why are those with greater ‘intelligence’ not accorded greater moral status? • Is it the key variable?

  24. ‘SUFFERING AND MORALITY’ • ‘where we we know that a particular individual will be born ‘deformed’ or ‘ disfigured’. …the powerful motive that we have to avoid bringing gratuitous suffering into the world will surely show us that to do so would be wrong.’ • John Harris, Clones Genes and Immortality (Oxford, 1992)

  25. SUFFERING AS MORAL JUSTIFICATION • DO PEOPLE WITH DISABILITIES NECESSARILLY ‘SUFFER’ MORE THAN OTHERS? • IS SUFFERING ‘BAD’ OR PART OF BEING HUMAN?

  26. PRO-CREATIVE BENEFICENCE “Couples (or single reproducers) should select the child, of the possible children they could have, who is expected to have the best life, or at least as good a life as the others, based on the relevant, available information” • J. Savulescu. Procreative Beneficience: Why We Should Select The Best Children. Bioethics 2001;15(5): 413-426.

  27. Argued in relation to PGD • Presented as ‘moral duty” • How does one determines what constitutes the ‘best life’? • Does this condone sex or light skin selection? • Reproduction of oppressive social norms

  28. ECONOMICS AND CHOICES • Some argue that it is economically irresponsible to bring a child with a disability into the world given the cost of future care • Public policy is always about choices-does that extend to who we can ‘afford’?

  29. INDIVIDUAL CHOICE It is for the individual not the state to determine whether to have or what characteristics the potential child will have • Designer babies? • But is the State neutral?

  30. State determines what tests and research to fund • Already limits choice with regard to sex selection • Practice influences choice • ‘Wrongful Birth’ threat • Practice influences response and construct • Insurance, availability of services, duty of the state?

  31. ARGUMENTS AND PRESPECTIVES FROM THE DISABILITY COMMUNITY

  32. SOCIAL CONSTRUCTION OF DISABILITY Disability is not an inherently negative trait, but is the result of negative social attitudes and the processes and policies which flow from them Therefore the elimination of fetuses with disability related traits is based on what amounts to biased and misinformed ideas about the nature of disability and the lives of people with disabilities

  33. THE EXPRESSIVIST ARGUMENT • It is impossible to argue for the eradication of traits associated with disability without at the same time expressing negative attitudes towards those who are currently living with disabilities. • Can we argue for the elimination of certain traits without at the same time reinforcing negative attitudes towards those who currently live with these traits?

  34. TRAITS VERSUS PERSONS • Arguments for elimination of fetuses with disability related traits assumes that a single trait is equivalent to, or overwhelms, the value of the person who carries the trait

  35. IDENTITY TRAIT OR DISABILITY? • If disability is in part constitutive of our identity-an identity trait- can we justify singling out this trait and not at the same time justify elimination of other socially devalued traits like gender, hair colour etc..?

  36. Public Policy Questions: • Is it plausible to both seek the elimination of someone and subsequently accord them rights bearing status?; • Will this trend refocus public policy away from addressing structural inequality and oppressive social constructs?; • Will we continue to see a massive investment of resources into ‘prevention’ of disability rather than providing appropriate support for equal citizenship?

  37. IS THERE A PUBLIC POLICY RESPONSE? • Restriction on testing is unlikely…but do we need to fund it or increase its use? Equity? • Regulation of PDG a possibility? • Can we make a list of ‘good and bad’ traits?

  38. ATTITUDES AND INFORMATIONS • Unbiased information presented to prospective parent may reduce disability related terminations • Better training for physicians • Balanced Genetic counseling • Involvement of people with disabilities and families in policy making and education • Changing ableist norms and attitudes

  39. THANK YOU DIVERSITY INCLUDES timst@interchange.ubc.ca

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