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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


The dark colour represents fluid filled spaces (ventricles and associated structures) within the brain.

Normal brain anatomy on left , malformation on right .


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 Š 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-srecommendations-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


The situation in Australia ‌ Australian Spina Bifida Livebirths & TOPs 180

160

140

120

100

SB Livebirths TOPs

80

Linear (SB Livebirths) Linear (TOPs)

60

40

20

0


Around the world ‌ ICBDR Spina Bifida Live births and TOPs 1975-2009 3000

2500

2000

1500

Livebirths TOPs Linear (Livebirths)

1000

500

0

Linear (TOPs)


UN Committee on the Rights of the Child “ 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”


“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


Increase in rate of stillbirths  seen as a disquieting trend  due to ‘positive developments’ in prenatal monitoring

Dr. K. S. Joseph


Creating a more ‘perfect’ society Valuable Able to contribute Less Valuable Cost to society


The Groningen Protocol 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 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 “. Alberto Giubilini and Francesca Minerva

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


 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/


PACRIM Conference on Disability & Diversity Presentation