The Autism Genome Project and GenocideThe Unbearable Uncertainty of Being (Autistic)

Panel Session 5From Eugenics to Self-Determination

Alistair S. de Gaetano

Tuesday, 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 ?