Will new test seek those “unworthy” of life?

21 Jan 2009

By The Record

Dr Joseph Parkinson of the LJ Goody Bioethics Centre warns about the ethical problems associated with any test for autism.


By Anthony Barich

LJ Goody Bioethics Centre director Rev Dr Joseph Parkinson says that there are “serious questions” to be raised over making a prenatal test for autism available.
A team of scientists led by Prof. Simon Baron-Cohen earlier this month found evidence to suggest babies exposed to high levels of testosterone in the womb have a higher risk of developing autistic traits than those who were not. While such a test would not be possible for several years, the researchers called for a full discussion on the medical and ethical issues before proceeding with any commercial development of the proposed autism test, which Rev Dr Parkinson applauded.
He said that the very process of amniocentesis – retrieving a sample of the pregnant mother’s amniotic fluid – carries a risk that, in the case of autism, does not justify the test.
Accurate prenatal testing performed for the right reasons can be “perfectly ethically acceptable”, Rev Dr Parkinson says, but warned that the history of prenatal testing shows it is too often a precursor to abortion, as has the Down syndrome test, which in some cases accounts for the aborting of 40 per cent of pregnancies diagnosed with the condition.
Given that amniocentesis can cause harm or even death for an unborn baby in one to two per cent of cases, an obstetrician would not generally recommend it unless the risk of the condition being tested for is significantly higher than the risk posed by the test itself, he said. “Since autism itself is not life-threatening, testing for autism by amniocentesis exposes the unborn child to unnecessary risk,” he said.
“On that account alone, one must raise serious questions about the wisdom of making such a test available.”
Also, given that many medical tests have a degree of error that must be considered, so there may be some risk of a test yielding a false result.
“Even though a child may carry the genes of autism, there is no way of knowing that particular child will be affected by those genes,” he said, adding that sometimes there seem to be no physical or developmental effects at all.
“So even if a prenatal test shows positive for autism, the child born may not display many, or even any, typically autistic traits. There are many successful high achievers who are genotypically autistic, but you would never know it.”
The Catholic Church’s “clear and unequivocal position” on such testing teaches that prenatal testing procedures are ethical if they do not pose unnecessary risk to the child and is intended to be of benefit to him or her.
But if the test is intended as a precursor to termination in the event of a positive result, or if it has no real therapeutic potential, then the test is unethical in the Church’s eyes.
He said that while some parents may argue that they would like to have advance notice of the child’s chances of autism to prepare themselves to provide for the child’s unusual developmental needs – a “reasonable argument” – “unfortunately, the history of prenatal testing often tells a different story”.
Antenatal screening for Down syndrome, for example, was originally development specifically to eliminate children born with the condition by offering parents the choice of termination, Rev Dr Parkinson said.
He said the outcome of such decisions rests not with the test or doctors but the parents – “as by the time a prenatal test is performed there is already a mum and dad in the picture” – and they are under great emotional strain.
Therefore, he said, the response of the Church – laity and clergy alike – must be “unwavering support”.
“While it is important that they are properly informed about all aspects of the decision, including the Church’s position on it, in view of the stresses they are under this information has to be given to them with great sensitivity,” he said.
It is “absolutely essential”, he added, that every parent in this position has the assurance of ongoing support from friends, family and church, and “even when we cannot agree with the decision made, we can and must support the person who has to make them, and who has to live with the consequences of their decision”.
“John Paul II called us to establish a culture of life amid the prevailing culture of death,” Rev Dr Parkinson said.
“For priests and (lay) people alike, that means upholding the dignity of every life as far as we are able, including parents who choose not to continue their pregnancies, even as we grieve the effects of their choice,” he said.
“Ultimately, as the Gospels teach us, we will be judged by God not on the basis of judgments we have passed on others, but on the compassion and practical charity we have offered them.”
He said that parents of autistic children speak more often of the blessings they have received than of the difficulties they have met along the way, and encouraged people worried that their child might be autistic to contact one of the many supports networks for parents.
The Autism Association of WA has a wealth of information on www.autism.org.au