Pacific Rim International Conference on Disability & Diversity

April 29 & 30, 2013 Honolulu, Hawai‘i

History of eugenics

Development of prenatal

screening technologies

Impact of prenatal screening

Share family stories

A Fully Formed Spinal Cord

An illustration of how the Neural Tube remains open and may

protrude in cases of Spina

Bifida

Normal brain anatomy on left , malformation on right .

The dark colour

represents fluid filled

spaces (ventricles

and associated structures) within the

brain.

http://www.facebook.com/pages/Baby-Elijah James/186118091409289?fref=ts

First used in 1883 by Francis Galton Greek origin Eu (good) Genics (birth)

The exposure of sick, weak, deformed children, in short, their destruction, was more decent and in truth a thousand times more humane

than the wretched insanity of our day which preserves the most pathological subject,

at any price, and yet takes the life of a hundred thousand healthy children through birth control or abortion,

in order subsequently to breed a race of degenerates burdened with illnesses.

Adolf Hitler, Zweites Buch 1928

Antenatal screening has become a socially acceptable form of genetic cleansing

Society leads us to believe that raising children with disabilities is a burden

Prenatal testing reinforces fear of disability

Expectants parents suffer from ‘genetic anxiety’

Eugenics, helping or

eradicating disability?

Is it a noble aim to rid the world of mental and physical disability ?

28-Aug-12

NewsNight © BBC

Used as a test for open NTD since the 1970’s

1972 – first diagnosis of Anencephaly

1975 – first diagnosis of Spina Bifida

A marker molecule, which indicates an affected foetus early enough to allow termination of pregnancy, has so far not been

found. We suggest that AFP could act as

such a marker molecule.

Brock & Sutcliffe

Antenatal Screening

… recommended

… essential

… advised

… important

… sensible

… routine

Principles of Medical Screening

Tests carried out on a large number of apparently healthy people to separate those who

probably have a specified disease, from those who do not.

Oxford Concise Medical Dictionary

For the purpose of

Detecting a condition requiring

available treatment

Cure, heal or mitigate the condition

Reduce or prevent its impact and

complications

“Because caring for the disabled can impose great burdens on our society, the

prevention of disabilities, in addition to its other benefits may save money. The costs of providing maternal serum AFP screening for

all pregnant women would be more than offset by the economic benefits in terms of

savings of expenditure on children and adults with Spina Bifida”

Aksoy S Antenatal screening and its possible meaning from unborn baby’s perspective

BMC Medical Ethics 2001, 2:3 doi:10.1186/1472-6939-2-3

Federation of International

Gynaecology and Obstetrics

“ Further advances in prenatal diagnosis

there is a potential danger of stigmatization or discrimination against adults or children

affected by disorders “.

http://www.ranzcog.edu.au/component/docman/doc_download/207-figo-s-

recommendations-on-the-ethical-issues-in-obstetrics-and-gynaecology.html?Itemid=72

Year Spina Bifida

1996 34

1997 24

1998 31

1999 26

2000 32

2001 13

2002 12

2003 13

2004 16

2005 21

2006 14

2007 11

2008 19

2009 9

0

20

40

60

80

100

120

140

160

180

Australian Spina Bifida Livebirths & TOPs

SB Livebirths

TOPs

Linear (SB Livebirths)

Linear (TOPs)

The situation in Australia …

Around the world …

0

500

1000

1500

2000

2500

3000

ICBDR Spina Bifida Live births and TOPs 1975-2009

Livebirths

TOPs

Linear (Livebirths)

Linear (TOPs)

“ Behind the statistics and the denial of rights to disabled children is an attitude which views the life of a

disabled child as of less worth, less importance and less potential than

that of an able-bodied child “

“ The abortion of unborn babies known to be handicapped needs to be opposed with great force”

“ All children have the right to life”

UN Committee on the Rights of the Child

“Never give up on your instincts because if it

weren’t for me following mine and not following the advice of medical specialists who

didn’t believe in Rohan he wouldn’t be here today”

Heather McCabe

“ the purpose of prenatal diagnosis is to increase the possibility of optimal

management of the pregnancy and baby “

“ as birth outcomes improve, termination after diagnosis of

congenital abnormalities may well change “

“ It is virtually impossible to give a completely accurate

prognosis for a baby born with Spina Bifida”

Anthony Gallo

Paediatric Neurosurgeon

“ when a woman is pregnant there is a duty to consider the health of the woman

AND the foetus “

“ doctors should not discriminate against any patient … on the basis of disability “

“ the relationship shall be characterised by non-maleficence … acting in a manner

that minimises harm to the patient “

“ Determinants of increases in stillbirth rates from 2000 to 2010 ”

Canadian Medical Association Journal

Late-term abortions are the sole contributor to the huge increase in the number of deaths recorded as stillbirths.

Late term abortions associated with declines in the prevalence of congenital anomalies seen in live-born infants.

http://www.cmaj.ca/content/early/2013/04/08/cmaj.121372.full.pdf

seen as a disquieting trend due to ‘positive developments’ in prenatal monitoring

Dr. K. S. Joseph

Increase in rate of stillbirths

Creating a more ‘perfect’ society

Valuable Able to contribute

Less Valuable Cost to society

Active life-ending measures are only recommended because of disability.

It is medically and legally proper to withhold, withdraw treatment or medically terminate the life of a baby • functional disability • pain, discomfort • poor prognosis, and hopelessness • lack of self-sufficiency • inability to communicate • hospital dependency • long life expectancy (with a disability)

The Groningen Protocol

The Groningen Protocol

Applied to Babies with no chance of survival Babies that have a very poor prognosis dependent on intensive care Babies with a hopeless prognosis who experience what medical experts deem to have unbearable suffering BABIES BORN WITH SPINA BIFIDA

Parents find meaning in the lives of their children,

whether those lives are unimpaired or lived with severe impairments,

whether they are very short or not.

http://neonatalresearch.org

“To bring up such children might be an unbearable burden on the family and on

society as a whole, when the state economically provides for their care. The

fact that a baby has the potential to become a person who will have an

(at least) acceptable life is no reason for prohibiting (after birth ) abortion “.

http://jme.bmj.com/content/early/2012/04/12/medethics-2011-100411.full.pdf+html

Alberto Giubilini and Francesca Minerva

Secured critical changes to NSU antenatal screening programme for Down Syndrome and other conditions

Requirement for midwives and GPs changed from compulsory to advising of the availability of screening

We remain committed to ensuring that prenatal screening is limited to ‘life affirming’ care for families and their unborn baby

Diane Belcher Executive Director

Spina Bifida New Zealand www.spinabifida.org.nz

http://www.facebook.com/groups/SpinabifidaNZ/