According to medical ethicists, these cases raise serious ethical questions – not least concerning the value of the lives of disabled people – and fears that medical professionals may become overly cautious in their interpretations of diagnostic tests, which would then possibly result in the terminations of healthy pregnancies. One ethicist also claims that lawyers, looking to drum up business, are trawling communities with high rates of inbreeding and genetic disease.
“Wrongful birth” cases in which parents seek compensation for the costs of raising a disabled child, are well documented. Last year, a couple in California won $4.5 million in damages after Doctors ad sonographers failed to pick up that their son, now ages 4, had no legs and only one arm. One medical ethicist from the Hebrew University-Hadassah Medical School in Jerusalem poses the question, “What are the physiological effects on the actual children who are born?” He examines this by saying that he finds it extremely difficult to understand how parents can go to the witness box and tell their children that, “it would have been better for you not to have been born”.
The trend in Israel is now for the children themselves to sue for wrongful life, which generally carries a bigger award designed to compensate for a lifetime of suffering. Steinberg himself sits on the Matza committee, set up by the government to investigate the issue. One of the first successful wrongful life cases was brought before the California Court of Appeal in 1980, when a child sued for damages for being born with a neurodegenerative condition called Tay-Sachs disease (deadly disease of the nervous system, passed down through families). In Israel, the rate of lawsuits has been rising, since a legal precedent was put into place in 1987, whereas wrongful life litigation is not accepted in many other countries, including the UK and all but four US states.
The problem is exacerbated in Israel by a very strong pro-science, pro-genetic testing culture. “There is an entire system fuelled by money and the quest for the perfect baby. 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,” says Carmel Shalev, a human rights lawyer and bioethicist at the University of Haifa in Israel. The popularity of these tests is partly due to the fact that genetic disorders such as Down’s syndrome, deafness and cystic fibrosis are prevalent in Israel because of high rates of consanguineous marriage, which are unions between second cousins or closer relatives and are usually more common in the middle-eastern world, including many parts of Asia too. Since we all carry a smattering of defective genes, marrying a blood relative increases the risk of autosomal recessive disorders, in which two healthy partners – each carrying a single faulty copy – produce a child who inherits the double whammy of two defective copies. A common example within ultra-orthodox Jewish communities is Tay-Sachs disease, as stated before. It manifests itself in people carrying both faulty copies of the gene. If both parents carry a single copy, children have a one in four chance of having the disease.
Couples at high risk have the option of being screened before making the decision to marry or try for children. In Israel, in particular, a wide range of prenatal testing is offered by the state. Even private genetic testing is extremely popular with Israeli couples and its permissible to terminate viable pregnancies due to health reasons, with permission from an abortion committee. In the past five years, many wrongful life cases have been won, on behalf of the children with cystic fibrosis and spina bifida and typical payouts for these cases are around £500,000 all the way up to several million pounds, dependent on the severity of each individual case. However, due to a handful of wrongful life lawsuits in the past few years, the Israel society of Obstetrics and Gynecology advised the country’s Supreme Court that not every undetected birth defect should be the basis of a malpractice suit. Extreme learning difficulties or around the clock assistance with basic tasks such as eating and going to the toilet, for example, should not be equated with milder impairments such as missing fingers.
In culmination of all the issues related to the abortions of so-called “wrongful lives”, it is important to examine the possible moral effects of these cases. With such distinctions of various diseased or healthy fetuses, specific doctors and sonographers, who fear being sued over the birth of a disabled or diseased baby, might become over-cautious in their risk assessments, leading to couples aborting perfectly healthy fetuses. Steinberg, as mentioned previously, says that, “Physicians are doing a lot more defensive testing now, 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.” He also goes on to say that a study should be conducted to see how many of these aborted fetuses actually are diseased.
Speaking at a genetics conference last year, Steinberg voiced his concerns that some lawyers would seek to exploit the high rates of genetic defect sin some communities by trawling them for cases. “To go to these villages and look around for people willing to file a claim that it would have been better not to be born is going to far,” and, in my opinion, goes beyond the scope of humane nature and educated thinking. Although, another ethicist named Posner, who is part of the Matza committee, would argue that only a small number of these cases exist as a result of rogue lawyers targeting villages with high rates of inbreeding and that most clients are of couples who believe that they have been let down by the medical profession following genetic testing. Many Doctors gain a tremendous amount of money from prospective parents who are willing to pay for private tests, such as ultrasound and these doctors should not complain when, if they are negligent, someone comes after them. Without any criticism, I believe the medical profession would become corrupt.
Contributed by Varundeep Singh Khosa