Cape Town -
The mother of a young child with Down syndrome has taken her case to the Constitutional Court to claim for damages and to argue that common law should recognise a claim for “wrongful life”.
The applicant, known only as Ms H, to protect the identity of the child, attended the Kingsbury Foetal Assessment Centre in Claremont six months before the birth in 2007, to assess the risk of the child being born with congenital conditions.
She says staff at the centre did not warn her of the high risk that the foetus had of Down syndrome, and that she would have gone for a termination of pregnancy had she known.
She went to the Western Cape High Court, seeking R6.5 million in damages on behalf of her child, but her case was dismissed because the law does not recognise a claim for “wrongful life”.
Her argument before the Concourt on Thursday was that “wrongful life” should be recognised and that, because of the child’s dependence and need for continuous care, she should be able to recover damages to support that life.
The respondent – the Kingsbury Foetal Assessment Centre – argues that it has no legal duty to the unborn foetus.
It also says “wrongful life” should not be recognised in the law because awarding damages in this instance would be comparing the value of never being born with the value of living with a disability.
The Concourt has reserved judgment.
Vanessa dos Santos, president of Down Syndrome International and former national executive director of Down Syndrome South Africa, says: “This is such a controversial thing. Although we respect people’s decisions and we are pro choice, we think that it is inappropriate for something like this to go to the Constitutional Court. It goes against the UN Convention on the Rights of Persons with Disabilities.”
Article 10 of the convention says “every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others”.
Also, says Dos Santos: “Why should we devalue life just because of Down syndrome?
“Many people who have Down syndrome go on to lead high quality lives. Many are employed and can drive and are living happy lives. We don’t see it as a reason for termination.
“Nobody knows how their child is going to end up or what their quality of life will be, so how could one change the constitution to say a life is a ‘wrongful life’?”
Professor Amanda Krause, clinical director of the Genetic Counselling Unit at Wits University, says the nuchal translucency scan – which Ms H had – is not a diagnostic test, but a screening test that picks up 95 percent of Down syndrome cases. “Every test has an error rate attached to it, and with (nuchal translucency), there is a 5 percent margin for error. We get false positives, and we also get 5 percent false negatives.”
Krause says that any patient who has the test should have this information conveyed to them.
“They would need to know that it is not a diagnostic test but a screening test, and that an additional test can be done if a positive result comes up.”
Ms H’s case might have been a case of a false negative.
“What counts is whether the patient misunderstood the information that was conveyed to her, or if the information was not appropriately conveyed – which does happen sometimes.”
The case has raised the question of who plays what role. “We believe strongly that patients should decide what is appropriate for them,” Krause said. “Many people with a Down syndrome child believe that that child was a gift.
“But it is a very serious syndrome, and different families can cope with different circumstances.
“A genetic counsellor’s role is to talk it through with the patient (what the potential outcomes of the test are) before the urgency and emotion of the situation takes over.”
Krause advises that pregnant women shouldn’t consider a termination of pregnancy on the basis of a nuchal translucency scan alone.
“In advance of that, the genetic counsellor would need to say, ‘We are doing this test. If it is negative, the risk is reduced. If it is positive, the next step to consider would be a diagnostic test like an amniocentesis.”
All this information should be given up front so there is a clear path of action.
“We have progressive child rights law in South Africa, but in this context, it is complicated.”