Sunday, November 6, 2011

The children who say they should never have been born making legal history in Israel

By Jennifer O’Connell

They are the children who believe they should never have been born – and they are going to court to prove it.

In Israel, a growing number of children have taken legal action against the doctors who helped give them life, claiming that they should have been terminated as foetuses in the womb.

If you think the ‘right to life’ debate is an ethical minefield, then welcome to the ‘right to no life’ debate.

Wrongful life cases, as they are called, are similar to cases of wrongful birth – such as the one taken in California last month, in which the parents of a boy born with one arm and no legs successfully sued the medics who failed to diagnose his condition for $4.5 million – but for one, crucial difference.

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Cases of wrongful birth are normally taken by the parents. But cases of wrongful life, which are only permitted in four US States, and have been specifically ruled against in Germany, the UK and Australia, are typically taken by the affected individuals themselves, putting them in the unique and shocking position of being the children who sue for being born.

Some ethicists argue that ‘wrongful life’ cases are less psychologically damaging to the child. "I find it very difficult to understand how parents can go on the witness stand and tell their children 'it would have better for you not to have been born'," Rabbi Avraham Steinberg, a medical ethicist from the Hebrew University-Hadassah Medical School in Jerusalem, recently told New Scientist magazine.

"What are the psychological effects on the children?"

But what are effects on a child who stands up in court – metaphorically, or in some cases, literally – to say they wish they had never been born?

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The Israeli government intends to find out. Following 600 such cases there in the last 24 years, and many more cases of ‘wrongful birth’, it has launched an investigation into their validity – an investigation that’s throwing up some uncomfortable questions about the culture of endless reproductive choice.

There are a number of circumstances peculiar to Israel that have contributed to the spate of cases there. The first is high rates of consanguinity – marriage between cousins, which in some communities is as high as 67 per cent – and has in turn led to a high rate of genetic abnormalities.

Then there are abortion laws that rank among the most liberal in the world, and Israel’s culture of what doctors are calling the “quest for the perfect baby" - which has been fuelled by the pro-science outlook, and the widespread use of genetic testing. As Israeli professor of medicine, Meir Brezis, put it last month: “An illusion has developed in Israel that it is possible to ensure a perfect baby by means of extensive testing during the course of the pregnancy.”

And thus, in Israel, more pregnancy scans are performed than in most other Western countries.

In utero screening represents a major advance in maternal and foetal wellbeing. But like most significant scientific advances, it has also opened up an ethical minefield.

Most of the time, parents simply use it to arm themselves with knowledge of any difficulties their child might have during pregnancy after birth. Occasionally, the foetus is found to be at risk of a level of disability that they feel exceeds their capacity to cope, or that will make the baby’s life untenable. In those cases, the parents might choose to terminate, though this is not an option available in Irish law.

In Israel, however, parents can make the decision to have an abortion at any stage, so long as they have the approval of an abortion commission. Abortions can be carried out on foetuses with a mild defect up to week 24; babies with a ‘moderate abnormality’ can be aborted up to week 28, and babies with a severe impairment that will require lifelong assistance can be aborted right up to the very end.

The spate of ‘wrongful life’ cases is an inevitable by-product of this culture of limitless choice: the children taking the cases claims their parents would have terminated them if their conditions had been properly diagnosed in utero.

In general, I believe in choice. My personal view has always been in favour of both euthanasia and abortion in certain circumstances. I mostly support a couple’s right to do whatever needs to be done to achieve pregnancy – whether that’s IVF, surrogacy, egg or sperm donation.

But choice cannot be limitless – and the choices of individuals are not made in a vacuum.

As the professor of medicine at Hadassah University Hospital, Meir Brezis, said when giving evidence at an Israeli Supreme Court public committee on the topic of wrongful birth cases: “[It’s] encouraging the perception of the disabled as people whose existence should have been prevented.”

According to a lawyer quoted in New Scientist, the typical payout for someone with spina bifida or cystic fibrosis who successfully takes a wrongful life case is 4.5 million shekels, or around €900,000.

What kind of message does that send to all the people leading full, happy existences, in spite of these conditions?

As Israeli courts effectively give credence to the claim by some people with these conditions that they should never have been born, it doesn’t seem such a far cry from the Nazi-era programmes of enforced sterilization that were aimed at wiping out all forms of “life unworthy of life”.

Professor Arie Herman, president of the Israel Society of Gynecology and Obstetrics, touched on this earlier in the year, when he summed up the situation facing doctors in his country: “If we are a society that wants perfect children and everything else is wrongful birth, what does that say about our attitude to the disabled? That they basically don't need to be here, that they should have been destroyed first.”

He went on to say: “The question is an ethical one: Who is not welcome in the world?”

That’s a question that has echoes of a much darker time in Jewish history.

This column first appeared in The Sunday Business Post on November 6, 2011


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