After The Screening
Wed, 05/14/2008
Editorial Intern
After learning about the benefits of genetic screening from her physician, a pregnant woman decides to schedule an amniocentesis test. Doctors carefully screen her amniotic fluid sample, and they determine that her fetus has an extra 21st chromosome — in other words, the child will be born with Down syndrome. The patient instantly faces an emotional quandary: should she go forward with the pregnancy, or should she have an abortion? This kind of thorny ethical question was at the center of a forum on genetic disease forum held May 5 at the JCC in Manhattan. The forum, sponsored by The Jewish Week in association with UJA-Federation of New York, was titled “A World Without Genetic Disabilities: A Mixed Blessing?” Four expert panelists discussed the ethics of genetic screening practices and choices for pregnant women, in a discussion moderated by Amy Harmon, national correspondent and Pulitzer Prize-winning writer for The New York Times. A wide-ranging debate on abortion, genetic testing and the influence of Congress in such matters centered on the role of genetic counselors and on the balance of information they provide. The discussion seemed to stem from the notion that as technology develops at lightning speed, the ethical dimensions of genetic testing haven’t yet caught up. “We as a society do not yet know how to handle the situation,” Harmon said. Joining Harmon was Dr. Harry Ostrer, director of the Human Genetics Program at the New York University School of Medicine; Adrienne Asch, director of the Center for Ethics at Yeshiva University; Nancy Dubler, director of the Center for Ethics and Law in Medicine at the Albert Einstein College of Medicine; and Rabbi Mordechai Liebling, father of Lior Liebling, the subject of a new documentary, “Praying with Lior.” Approximately 150 audience members filled the auditorium and later contributed to a heated question-and-answer session. Ostrer opened the panel by presenting several ethically complex scenarios where potential mothers would have to make the crucial decision of whether or not to abort their fetuses, and one example became the groundwork for the evening’s arguments. This particular scenario, which involved an amniocentesis in a twin pregnancy, sparked the most controversy. In Ostrer’s scenario, the first child had an extra male chromosome, which could cause impulse control problems and has been correlated with a higher rate of incarceration. The second child — also a male — had an extra 21st chromosome, meaning that he will be born with Down syndrome. According to Ostrer, amniocentesis is incredibly safe, and there is no difference in pregnancy loss rate between those who do and do not have the test. “No prospective parent should be in a position where they have to make a decision about an abortion in two days,” responded Asch, arguing that any conversation about genetic disabilities and abortion needs to take place as early as possible in the pregnancy. She said prospective parents should think of disability as simply a characteristic of a person, rather than a problem that must be nationally legislated. Rabbi Liebling, whose son Lior has Down syndrome, explained that he and his family recently went to Capitol Hill to advocate legislation that would provide “balanced counseling” to women carrying Down syndrome fetuses. That kind of counseling, he said, provides an increased supply of information about living with developmentally disabled children.  Maintaining that a Down syndrome child can bring happiness to a family, he described the “enormous amount of love” that Lior gives to his parents and siblings. “His emotional IQ is probably off the charts,” Rabbi Liebling said. “I go through life with a much deeper appreciation of what people are able to do — because I learned that from Lior.” As an argument for balanced counseling, Liebling cited a study that found that 92 percent of women who learn they are carrying a child with Down syndrome terminate their pregnancies. (An audience member countered that the figure was likely deceptive because those women who get the screening may be predisposed to having an abortion.) Albert Einstein’s Dubler said that while she is against the idea of creating “designer children,” she feels it is crucial for geneticists to inform patients of their screening possibilities and provide all possible information available about potential diseases. Most important to Dubler is an “honest discussion” so the woman can make an educated decision. Rabbi Liebling and Asch vocally supported balanced counseling and urged contact with families who are already living with disabled children. Dubler and Ostrer argued against such counseling, which Dubler feared could be “subtly coercive” and might undermine the parents’ right to make a decision. “I find the idea of legislating the practice of medicine to be reprehensible,” Ostrer said. “Where’s the rabbinate in all of this?” While they differed on the issue of balanced counseling, both Ostrer and Rabbi Liebling agreed that a refurbished genetic education for rabbinical students would benefit expectant Jewish parents, as many do turn to clergy members at this period in their lives. As the debate over balanced counseling raged on, Asch struck a particularly controversial when she said physicians’ current counseling systems are like the “Schindler’s List” of genetic testing. The reference was to Oskar Schindler, the Holocaust-era German businessman who saved Jews. The comment enraged Dubler and particularly offended Ostrer, who said that medical geneticists like himself devote much of their time to teaching parents how to care for their children. After the conference had concluded, Ostrer continued to defend himself against what he viewed as an attack by Asch. “If there is someone who faces a significant genetic risk in their pregnancy, there are two professions that are equipped to provide accurate information and non-directed genetic counseling,” he said. Rather than Congress, these two groups of people are medical geneticists and genetic counselors who, Ostrer explained, are obligated to discuss the availability of genetic testing with prospective patients. “Why should [women] be made to feel guilty because they chose to terminate a pregnancy?” Ostrer argued, reiterating that many women have neither the financial nor emotional resources to care for a disabled child. “It is very hard to be judgmental of other people’s circumstances.” As technology advances, Ostrer added, he hopes people will respect a woman’s right to abort as “a morally acceptable position.”