A guardian at the gates of life

By
May 5, 2007 22:02

Australian geneticist Agnes Bankier, an Orthodox Jew, wants to work more with Israeli counterparts.




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Dr. Agnes Bankier is unique. Not only are there no other women at the pinnacle of clinical genetics in Australia, but the director of genetic health services in the State of Victoria is also an Orthodox Jew. Although her religious views don't affect her daily work, they influence her views on ethical practices, says Bankier, who has a population of 5.5 million in Victoria and nearby Tasmania under her purview. Her colleagues and subordinates clearly respect her faith and rituals. "If I'm still in the office at 3:30 p.m. on a Friday in the winter, they get anxious that I won't get home in time for Shabbat," she tells The Jerusalem Post. "And when there are long meetings, they bring in catered kosher food." In fact, she says, in Australia she has never suffered from anti-Semitism for being Jewish or observant. "The only time I did experience anti-Semitism was as a child in Hungary. My family and I left for Australia after the revolution in 1957. I remember being six and coming back from school in Hajdunanas. My grandfather didn't come to meet me. I was taunted by other children and ended up in a ditch of snow." It was serendipity that led the graduate of Monash University Medical School in Melbourne to go into genetics. She had started her pediatrics training when her daughter was 18 months old, and did her final exams when pregnant with her son. When she was offered a traineeship in genetics, the young mother jumped at the chance because "the field offered easy hours and no working nights or weekends." Her second husband (whom she married as a widow) is an Egyptian-born Sephardi dentist whose mother is of Italian background and whose father is Greek. Today, both of Bankier's adult children have spent much time in Israeli religious educational institutions, and are thinking of aliya. "I was born to an observant family, and over the years I have become more committed," she says. She was in Israel primarily on a family visit, but did stop by at Jerusalem's Shaare Zedek Medical Center to meet with its leading medical geneticist Prof. Ephrat Levy-Lahad. WORKING HER way up in the Victoria health hierarchy, Bankier was named acting clinical director of the Victorian Clinical Genetics Services (VCGS) for three years, then head of the genetic service at the Monash Medical Center for 10 years before being appointed director of VCGS. Officially part of the Murdoch Children's Research Institute as a wholly owned subsidiary, it is one of the largest genetic service in Australia. Bankier became president of the Human Genetic Society of Australasia and served on many of its committees, including the ethics and social issues subcommittee. She sits on many state and national committees, and has a special interest in genetic education and advising medical schools on their genetic curriculum. Both Australia and Israel have a national health insurance system. But in Australia, clinical genetic diagnostics, counselling and treatment are provided and completely funded by the state; in Israel, responsibility is divided haphazardly between the Health Ministry and the four health funds, with most tests for carriers of genetic mutations not included in the basket of services. Bankier's staff provide genetic counselling and lab testing to all residents of Victoria and Tasmania who require it. The policy is not to tell clients what to do but to give them choices and insure that they are well informed. Genetic screening, she says, is not mandatory. "My day is wonderfully varied. I do management and organization of service, mentoring of our service leaders, chairing of management meetings and lab management. I lecture in genetics, manage the POSSUM program (a database for syndrome diagnosis) and see some patients." She was inspired by the late Prof. David Danks, the founder of clinical genetics in her country who got the authorities interested in prevention. Her staff of 150 - a third in clinical services and two-thirds in lab services - provide genetic services to Australians of all ages. "Our services are offered both in metropolitan areas and outlying regions. There is equity of access to all, and we travel to reach people by car, rail and even by plane. My staff do 10,000 consultations a year for people of all ages." HISTORICALLY, she explains, "it began with counselling for birth defects, and then moved into reproductive genetics, such as amniocentesis and chorionic villae sampling in pregnant women to detect genetic problems such as Down syndrome. If a condition is diagnosed and the family elect to interrupt the pregnancy, the abortion is paid for by the state." The latest advanced technology used is pre-implantation genetic diagnosis (PGD), in which a cell (or two) is removed from a few-day-old embryo produced by in-vitro fertilization (IVF). The cell removal doesn't harm the fetus, and allows for the accurate diagnosis or genetic syndromes. It can also be used to determine the sex of each embryo. This technique was first offered here at Shaare Zedek, and when a genetic defect is sex-linked, an unaffected embryo is chosen for implantation. The Health Ministry in Jerusalem has even allowed an exceptional procedure for non-medical sex selection when there is no danger of a diseased embryo, but a desire to produce one sex after a couple have had numerous children of the other. Bankier says sex selection for non-medical reasons is prohibited in Victoria. Embryonic genetic testing is boosting the success rate of IVF pregnancies, she notes. However, the potential to screen for non-life-threatening illnesses and to create babies with specific tissue types or physical attributes also raises difficult ethical issues. LEVY-LAHAD, who heads the medical genetics unit at Shaare Zedek, says she is "envious" of Bankier and the Australian system because "everything is paid for by the state, without procedures falling between the chairs of the Health Ministry and the health funds. When the National Health Insurance Law was passed in 1994, genetic counselling and technology was in its infancy, and services available in 1994 were set as the standard for those to be included in the basket and supplied by the health funds." Today, those are outdated, she says, and "it's a struggle to get any new technology added to the basket." In Victoria, there is a set budget; the VCGS can decide to do whatever tests it feels necessary, with the ability to update the basket by itself. Here, if a prenatal diagnosis is done by ultrasound, the health fund pays, and if it is Mendelian [by gene study], the Health Ministry is supposed to pay. The system is more fragmented. Some technologies are available only to those who pay for supplementary health insurance. But Levy-Lahad gives a lot of credit to Prof. Yoel Zlotogora, head of the ministry's community genetics service, for upgrading services. Yet in Australia, in addition to having more money, genetics is a national priority. Bankier and Levy-Lahad want to promote collaboration between Shaare Zedek and the Murdoch institute. About a year ago, Shaare Zedek pediatric neurologist and medical ethics expert Prof. Avraham Steinberg spent several weeks in Victoria lecturing. Steinberg, an Orthodox rabbi who received the Israel Prize for his work in Jewish medical ethics, greatly impressed Christian secular audiences, Bankier comments. Now an Australian expert, Prof. Martin Delatycki, is due to visit Shaare Zedek soon, and an Australian Jewish benefactor is ready to finance joint research. Australia is a multicultural society like Israel, but it doesn't have to worry much about consanguinity. In Israel, such inbreeding in the Arab community is responsible for a large percentage of hereditary diseases. "We have quite a few immigrants from Turkey but not a large Arab population, so consanguinity is not a significant problem," she notes. Paid for by state funding, the VCGS offers blood or cheek brush sample testing to identify carriers from high-risk families of a variety of diseases, including breast cancer, bowel cancer, cystic fibrosis, deafness, Fragile X syndrome, hemochromatosis, hemophilia, Huntington's disease and thalassemia. Tay-Sachs screening is not yet funded by the state, but is carried out, with philanthropic support, among Jewish 11th graders of Ashkenazi origin. Predictive testing for Huntington's, a horrific progressive neurological disease that kills all its victims, is available in Victoria. Some people with the disease in the family want to see if they have inherited the gene and others refuse, as there is no known intervention [treatment]. It is generally held that testing is not appropriate in children and teenagers, as it cannot be treated, but maybe eventually it will be possible. But couples who know that one is a carrier can now have either PGD or a prenatal diagnosis. "It is difficult to know how many conditions are preventible with our screening program," Bankier says. "When people are informed, they can make an informed decision. If their own sperm or ova can't be used because they carry a serious genetic disease, they can get donor sperm or eggs. We don't set the rules. The principle is that we support the choice that couples make about the children they have." MOST OF the elective abortions in Victoria, she says, are for social rather than health reasons, and abortions are paid for by the state. Bankier thinks that late termination of pregnancy (during the second or even third trimester) is actually more common in Israel than in Victoria, where 13% of pregnancies with a birth defect are terminated before 20 weeks and less than 5% after 20 weeks. "Abortions can readily be performed during the first three months in Australia. But late termination - which is also caused fetal destruction - is a very serious issue." There are many cases, she says, in which people seek genetic services that are not the standard. "For example, we had a couple who wanted PGD not to terminate the pregnancy but only to learn the genetic profile of the embryo. We turned them down for testing and instead took them through the process of discussion that enabled them to make that choice." She is very proud of POSSUM (Pictures of Standard Syndromes and Undiagnosed Malformations), a database of syndromes linked with photos. It was the first of its kind in the world when she helped start it in Melbourne in 1987. "It was David Danks' idea, using Japanese technology, a videodisk and a computer database with over 3,000 syndromes. An online version called Possum Web, open as paid subscriptions to doctors and medical institutions, has just been launched. Detailed information is available about genetic syndromes and birth defects linked to images, X-rays and scans. The POSSUM database is used in 500 hospitals in 50 countries, including Israel," she says. Almost seven years into her job, Bankier says that 10 years in the directorship is as much as one should do. "There is a limit to creativity and enthusiasm. There is nothing in Victoria beyond this, as I have the top job in my field. After a decade, I hope to find new challenges, possibly to do genetics research and work with patients." Despite her great interest in genetics, Bankier stresses that "we are more than our genes. We get tendencies from them, but the environment has a great influence. "Studies of battered children, for example, have shown again and again that psychological development is impaired when healthy young children are abused and are unable to trust others when they grow to adulthood. And many disorders result from a multiplicity of genes. Even with a defective gene that can cause breast cancer, not everyone with the gene will get it."


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