alistair de gaetano: the autism genome project and genocide: the unbearable uncertainty of being...
TRANSCRIPT
The Autism Genome Project and GenocideThe Unbearable Uncertainty of Being (Autistic)
Panel Session 5From Eugenics to Self-Determination
Alistair S. de GaetanoTuesday, 7th July 2015
Why?
Genocide – the 'Big Word' The Search for the Autism Gene Current/ Future Initiatives & Warnings History Repeating Itself?
What is Genocide?UN Convention ”intent to destroy […], in whole or in part, […] a group”
Killing Serious Bodily or Mental Harm
Conditions of Life calculated to bring about its Physical Destruction Measures Intended to Prevent Births Forcibly Transferring Children to Another Group
'Protected Groups'
Convention: National, Racial, Religious, Ethnic
Fallacy: Rooted in History, not in Subject-Matter UN Tribunals/ National Laws: have remodelled Definition Authors – Substance Rather Than Politics
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.”
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.”
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 life
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 health
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"
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 Statistics
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’
Possible Future Implementation?
Termination of Life Post-Natally
Groningen Protocol (Netherlands)
Euthanasia in Children (Belgium)
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‘
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 completely
Instead, highlighted provision on:'fetal anomalies incompatible with life' - just not to extend benefits to hypothetically disabled unborn fetus (Japanese UN proposal)
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'
Autism Rights: Discarding the Social Model
EU CHARTER OF FUNDAMENTAL RIGHTSArticle 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 RIGHTSArticle 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 BIOMEDICINEArticle 12: Predictive Genetic Tests – “Tests (…) may be performed only for health purposes or for scientific research linked to health purposes”
THEN… RACISM
CLASSIFICATION US 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 HAPPENED
…AND NOW AUTISM
CLASSIFICATION US (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 ?