The Unbearable Uncertainty of Being Autistic Panel Session 5 From Eugenics to SelfDetermination Alistair S de Gaetano Tuesday 7 th July 2015 Why Genocide the Big ID: 499950
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Slide1
The Autism Genome Project and GenocideThe Unbearable Uncertainty of Being (Autistic)
Panel Session 5From Eugenics to Self-DeterminationAlistair S. de GaetanoTuesday, 7th July 2015Slide2
Why?
Genocide – the 'Big Word' The Search for the Autism Gene Current/ Future Initiatives & Warnings History Repeating Itself?Slide3
What is Genocide?
UN Convention ”intent to destroy […], in whole or in part, […] a group” Killing Serious Bodily or Mental HarmConditions of Life calculated to bring about its Physical Destruction Measures Intended to Prevent Births Forcibly Transferring Children to Another Group Slide4
'Protected Groups'
Convention: National, Racial, Religious, EthnicFallacy: Rooted in History, not in Subject-Matter UN Tribunals/ National Laws: have remodelled Definition Authors – Substance Rather Than PoliticsSlide5
Genocide Beyond Politics (1)
UN General Assembly Resolution 96 (I) (1946) “denial of the right of existence of entire human groups” “such denial of the right of existence shocks the conscience of mankind, […] and is contrary to moral law and to the spirit and aims of the United Nations.”“genocide is a crime under international law […] whether the crime is committed on religious, racial, political or any other grounds.”Slide6
Genocide Beyond Politics (2)
Helen Fein (1988) “[g]enocide is a series of purposeful actions by a perpetrator(s) to destroy a collectivity through [...] suppressing the biological and social reproduction of the collectivity. The perpetrator may represent the state of the victim, another state, or another collectivity.”John Thompson & Gail Quets (1990) “[i]n short, given the problems which arise from restrictions, we define genocide as the destruction of a group by purposive action.”Slide7
Search for Genetic Markers (Research) (1)
The Autism Genome Project (1) Led by Oxford University - EU Funding - 50 organisations including NAAR and Autism Speaks 'Using European and international populations to identify susceptibility loci' Stated Aims include: Identifying 'susceptibility alleles' in DNA
"Understanding the molecular and cellular nature of the brain dysfunction associated with autism"Developing rational strategies linked to both prevention and treatment, leading to improvement of quality of lifeSlide8
Search for Genetic Markers (Research) (1)
The Autism Genome Project (2) EU Legal Basis: Art. 168(1) Treaty on Functioning of the EU Authorises EU action on Public Health covering:
the fight against the major health scourges promoting research into their causes, their transmission and their prevention health information (incl. epidemiology) and education monitoring, early warning of and combating serious cross-border threats to healthSlide9
Search for Genetic Markers (Research) (2)
Discovery of Autism 'Genetic Signature‘ (2013)Autism Center of Excellence: University of California, San Diego Babies as young as 12 months 4 particular gene patterns Detection: ‘simple blood test’ –
available in 2 years "Children at risk of autism"Slide10
PGD (Implementation) (1)
Western Australia – PGD Testing (2013)“Reduc[ing] the chance of a high-risk family having a child with autism” Worrying 'science': 4-5:1 chance of having 'disorder' for males
selecting a female embryo to reduce the chance of autism (state CMO) What about: Femicide Comparison Current StatisticsSlide11
PGD (Implementation) (2)
UK Human Fertilisation and Embryology Authority – PGD Testing Mooted For ‘families at high risk’ of having an autistic child
Criteria (Act): “highly heritable, life threatening disorders” Autism: listed as “genetic condition awaiting consideration” Candidates: ex. families who already have 2 boys ‘with severe autism’Slide12
Possible Future Implementation?
Termination of Life Post-NatallyGroningen Protocol (Netherlands) Euthanasia in Children (Belgium)Slide13
Official Warnings (Red Flags)
UN Committee on the Rights of Persons with Disabilities (2011) – Report on Spain"While the Committee recognizes women's right to reproductive autonomy, [...] [t]he Committee recommends that [Spain]
abolish any distinction, allowed by law, in the period within which a pregnancy can be terminated based solely on disability.“ (similar comments re Austria)2 specific cases in which time limits are extended: until 22 weeks: 'a risk of serious anomalies in the foetus' beyond week 22: 'an extremely serious and incurable illness is detected in the foetus‘Slide14
Official Warnings (Red Flags)
UN Committee on the Rights of Persons with Disabilities (2011) – Spain’s Reply‘Risk of serious anomalies': must be certified by 2 medical professionals‘
Serious and incurable illness‘: ignored completelyInstead, highlighted provision on:'fetal anomalies incompatible with life' - just not to extend benefits to hypothetically disabled unborn fetus (Japanese UN proposal)Slide15
Official Warnings (Red Flags)
UN Committee on the Rights of Persons with Disabilities – Spain (2011) Historical Explanations in Medical Terms 2010s:
'incompatible with life‘ 1930s: 'life unworthy of life' (Alfred Hoche)'mentally dead/ human ballast/ empty shells of human beings'Slide16
Autism Rights: Discarding the Social Model
EU CHARTER OF FUNDAMENTAL RIGHTS
Article 3:
“
In the fields of medicine and biology (...) the prohibition of eugenic practices, in particular those aiming at the selection of persons, must be respected”.
UN DECLARATION ON THE HUMAN GENOME AND HUMAN RIGHTS
Article 1:
“
The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity. In a symbolic sense, it is the heritage of humanity.”
Article 2 (a) :
“Everyone has a right to respect for their dignity and for their rights regardless of their genetic characteristics.”
COUNCIL OF EUROPE CONVENTION ON HUMAN RIGHTS AND BIOMEDICINE
Article 12: Predictive Genetic Tests –
“Tests (…) may be performed only for health purposes or for scientific research linked to health purposes”Slide17Slide18
THEN…
RACISM
CLASSIFICATIONUS AND THEM
SYMBOLIZATION
THEM: JEWS, GYPSIES, ETC
DEHUMANIZATION
JEWS AND GYPSIES ARE SUB-HUMAN
ORGANIZATION
WE NEED TO SOLVE THE JEWISH/ GYPSY PROBLEM
POLARIZATION
HAVING JEWS/ GYPSIES AROUND IS A PROBLEM FOR
YOU
PREPARATION
LET’S IDENTIFY WAYS TO GET RID OF THIS PROBLEM
EXTERMINATION
TAKING STEPS TO GET RID OF THE PROBLEM
DENIAL
NOTHING BAD HAPPENEDSlide19
…AND NOW
AUTISM
CLASSIFICATIONUS (NORMAL PERSONS) AND THEM
SYMBOLIZATION
THEM: AUTISTICS/ PERSONS WITH AUTISM
DEHUMANIZATION
AUTISTICS ARE BROKEN/ INCOMPLETE
ORGANIZATION
WE NEED TO TACKLE THE AUTISM EPIDEMIC
POLARIZATION
YOUR CHILD DESERVES TO BE LIKE HIS PEERS!/
THIS MIGHT HAPPEN TO
YOUR
KID!
PREPARATION
LET’S IDENTIFY WAYS TO GET RID OF THIS PROBLEM
EXTERMINATION
TAKING STEPS TO GET RID OF THE PROBLEM
DENIAL
?