The quest for the perfect baby
Should parents be able to sue doctors for failing to prevent the birth of a child with a defect? That is a question facing the Supreme Court, which has been asked to recognize 'wrongful birth'.
The ultra-sound test showed a cyst on the embryo's brain. My daughter-in-law pondered whether to terminate the pregnancy. According to the statistics, this finding usually has no significance. But is that enough to assuage the anxiety that the child might be born with a defect? Three years ago this grandchild was born - a charming, cheerful, beloved and amazingly intelligent child - who had been just a hair's breadth away from abortion.
In Israel more pregnancy scans are performed than in other Western countries, including Germany, the United States and Japan. Moreover, the pregnancy termination policy in Israel is far more liberal, especially with regard to late-term abortion, when the fetus is already viable. Alongside high technological capabilities and the high frequency of genetic diseases, 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. The Supreme Court has been asked recently to recognize "wrongful birth" - the right of the child and his parents to sue the doctors for a birth with a defect that could have been detected, leading to an abortion. In the wake of the debate on the issue, a public committee was established before which I had the opportunity to testify. Herewith are the aspects I raised before that committee.
I would like to thank Dr. David Mankuta, head of labor and delivery at the department of obstetrics and gynecology at Hadassah University Hospital, Ein Kerem, Jerusalem and writer Michal Guvrin for their help in formulating my opinion.
There is an inflated esteem among the public of the general usefulness of tests during pregnancy. A pregnant woman will most often think: "What is the damage that might be caused by the test? It is better to know. I will spare no effort for my child." However, the truth is more complex. Every test has a limited ability to discover a problem. This is the characteristic of a test called sensitivity and it never reaches the level of 100 percent, but rather mostly 80 to 90 percent. Moreover, in every test there is the possibility of the false indication of a problem and the more tests are done, the greater the likelihood of error. The suspicion raised by such a test leads to an intrusive investigation, such as puncturing of amniotic fluid, which entails risks, including miscarriage.
Too many tests
The multiplicity of tests also lead to psychological tension and the natural process of pregnancy becomes a nightmare of anxieties for the parents. Inevitably, in the end unnecessary abortions are performed. Nor is it easy for doctors to acknowledge the risk of extensive testing. Moreover, in light of the threat of malpractice suits if any defect is discovered after the birth, they avoid taking even the smallest risk. The price is paid by the aborted fetuses and the families that are prevented from raising those children.
For the most part there is no appropriate quality control of decisions to carry out an abortion, for fear of discovering a mistake that will make things difficult for the parents and the doctors.
There are important and useful tests during a pregnancy; others are introduced even before the efficacy and safety have been proven. Under pressure from the industry, advanced tests are being introduced to identify mutations in genes, the significance of which is not yet known. The confusion is great and in the opinion of many experts this situation should be regulated.
Industry's vested interests
Behind the testing industry are also economic interests of private and public institutes. The adoption of a test the efficacy of which has not yet been proven poses a challenge: If the tests are not useful and they are carried out with public funding, this is a blow to equality ("medicine for the rich" ). Only useful tests should be introduced into the basket of health benefits but for the most part many years are needed in order to arrive at a fully formed assessment of the nature of tests.
Money that is invested in unnecessary tests would be more effectively used in education for parenthood: including the need to take folic acid and refrain from smoking during pregnancy, the importance of breastfeeding for half a year after the birth and accident prevention. These actions, which have been proven to be effective, are not sufficiently implemented because there is not a strong industry behind them.
The "perfect" child
The lack of recognition of medicine's ability to ensure the birth of a healthy child and of the fact that the environment is no less important to the child's development is creating the expectation of a perfect child - a kind of lottery that must be stopped if it has not been successful. At the basis of this outlook are archaic perceptions concerning the body. In Israel there is an ethos of the perfection of the body, of the strong sabra (native-born Israeli ), as a victory over the weakness of the Diaspora. The obsession with the perfect body has intensified with the development of the visual media and the ratings culture, which is causing an epidemic of eating disorders.
The attitude toward people with defects is marked by stigma and a low evaluation of their quality of life. It is hard for us to understand deaf parents who want deaf children, because they see this as perfection. As Dr. Viktor Frankl wrote (in his book "The Doctor and the Soul" ), the reaction to a disability is more significant than the handicap itself.
Israel lags behind in its attitude towards the disabled. The ethos of the perfection of the body exacts an additional social price: Compared to other countries Israel stands out in an unwillingness to donate organs. The most common reason for this, according to surveys, is not religious but rather the desire to preserve the perfection of the body.
The Jewish approach
Is this approach congruent with Jewish tradition? In Aharon Appelfeld's story of survival in a concentration camp ("And the Rage Is Not Yet Over" ), surprisingly an amputee and a deaf-mute overcome the machine for killing the weak. The amputee says: "People... don't imagine that with the left hand it is possible to do what can be done with both hands and sometimes even more." In Jewish culture, redemption in fact comes from the sick, the weak and from those who are different: Lepers presage the salvation from Sennacharib; the Messiah bandages his wounds waiting at the gates of Rome; Ruth the Moabite is the mother of the royal house of David.
The aspiration for a perfect body is accompanied by an excessive belief in technology. Sociologist Prof. Dorothy Nelkin describes the growth of hope for solving society's problems in the wake of scientific breakthroughs: The decoding of the genome today is like the decoding of chemistry a century ago. Despite the successes of positive science, the best technologies cannot substitute for values. A German professor of genetics, Benno Muller-Hill, who courageously condemned the medical establishment's collaboration with the implementation of racial theory, wrote that "in every technology there is the danger of relating to a human being as an object" ("Murderous Science" ). Today, in Germany they are cautious about embryo selection and the excessive use of technology.
Is it in fact from Zion that a new racial theory will emerge?
The feelings of a mother in a late-term pregnancy termination were researched recently by Dr. Ronit Leichtentritt of Tel Aviv University. In her article published in the journal Social Science & Medicine (January, 2011 ), she describes the mother's sorrow as intolerable. In interviews conducted many years later, the woman was full of strong emotions, including anger, shame and non-acceptance of the decision. Because the issue is something of a taboo, healing discourse and the usual mourning rituals are absent.
The rush to sue for "wrongful birth"
The legal recognition of "wrongful birth" as well as the recognition of non-use of existing technology (or not informing parents about it ) are encouraging defensive medicine with many tests and abortions. 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. This comes in place of a view based on respect, a view that regards the person who is different as a source of variety.
The Health Ministry should include in the basket of services only screening tests that have been proven efficacious and should evaluate new tests in a research framework (funded by the industry and not by complementary insurance plans ), and with quality control. Instead of giving monetary compensation according to the quantity of tests, compensation should be given for explanation to parents, including explanation of the risks in multiple tests.
If nevertheless a disabled child is born - since there is no way of preventing this 100 percent - instead of receiving relative compensation in the courts, it is preferable to have systemic support for rehabilitation of the disabled in the community. The test of a society's ability to act with justice and charity is in the way it treats the disabled and the needy.
This year I had my students discuss where it is more worthwhile to invest money - in tests during pregnancy or in education for parenthood. At the end of the discussion, one student raised her hand and said: "I want to tell you about my little brother who was born with retardation: He has brought so much love to our family." The lesson this student received at home will be more important to her as a future doctor than many of the lessons at medical school.
The writer is a professor of medicine at Hadassah University Hospital, Ein Kerem, Jerusalem, in the Quality, Safety and Data Center. These remarks were delivered before the public committee on the topic of wrongful birth headed by (ret. ) Supreme Court Justice Eliahu Mazza.
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