The lecture focuses on the legal aspects of the research into the autistic genome – in the context of the significance of terminating pregnancies in which the fetus is expected to have a disability.

2. The Autism Genome Project and Genocide
The Unbearable Uncertainty of Being (Autistic)
Panel Session 5
From Eugenics to Self-Determination
Alistair S. de Gaetano
Tuesday, 7th July 2015

3. Why?
Genocide – the 'Big Word'
The Search for the Autism Gene
Current/ Future Initiatives & Warnings
History Repeating Itself?

4. 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

5. '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

6. 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.”

7. 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.”

8. 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

9. 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

10. 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"

11. 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

12. 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’

13. Possible Future Implementation?
Termination of Life Post-Natally
Groningen Protocol (Netherlands)
Euthanasia in Children (Belgium)

14. 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‘

15. 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)

16. 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'

17. 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”

19. 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

20. …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 ?