31 October 2011
ByAppeared in BioNews 631
High rates of consanguineous marriage in some traditional Jewish communities have resulted in an increased likelihood of birth defects in the resulting children. For example, ultra-orthodox Jewish communities are commonly associated with having high incidents of Tay-Sachs disease. If both parents are carriers of the faulty gene in this recessive disease, any resulting child would have a one in four chance of having the disease. The Israeli state offers ultrasound scans and genetic tests to couples at risk of passing on a genetic condition and private pre-natal screening is also widely available. Screening can detect potential defects and help determine whether an abortion should be considered due to health reasons.
The term 'wrongful life' refers to circumstances where the parents of a child allege had they known about a severe genetic problem with the fetus they would have elected to terminate the pregnancy. 'Wrongful life' claims are generally brought by the children – or the parents acting on behalf of the children. New Scientist says the Israeli medical profession has estimated there to have been 600 'wrongful life' lawsuits since the first case in 1987.
'There is an entire system fuelled by money and the quest for the perfect baby ', said human rights lawyer Dr Carmel Shalev of the University of Haifa in Israel. 'Everyone buys in to it – parents, doctors and labs. Parents want healthy babies, doctors encourage them to get tested, and some genetic tests are being marketed too early. Genetic testing has enormous benefits but it is overused and misused'.
The psychological implications of the lawsuits on the children concerned have been highlighted by several medical ethicists. '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. What are the psychological effects on the children?' said medical ethicist Professor Rabbi Avraham Steinberg of University Hadassah Medical School, Jerusalem. The precise legal basis for the children's claim and the court's approach to calculating damages is not, however, clear.
The ethical issues surrounding a claim for damages caused in utero are, however, controversial. Professor Meir Brezis of Hadassah University Hospital, Jerusalem writes: 'The expansion of the right to sue because of the birth of a disabled child is encouraging the perception of the disabled as people whose existence should have been prevented'.
Concerns have also been raised over the effect of the increasing number and value of claims against the medical profession. 'Physicians are increasingly practising defensive medicine, and doing a lot of testing', said Rabbi Steinberg. 'But more testing means more false positives – and that means more abortions, because geneticists don't always know if results indicating the possibility of chromosomal abnormalities are meaningful'.
Rabbi Steinberg sits alongside several other medical ethicists and medical malpractice lawyers, on the Matza committee that has been set up by the Israeli Government to investigate the rising number of 'wrongful life' cases.