Dr. Adina Aviram, Aliza Avraham, Nili Broyer, Orit Cherny-Golan, Rabbi Dr. Binyamin David, Prof. Nadav Davidovitch, Prof. Avraham Halbreich, Prof. Yael Hashiloni-Dolev, Dr. Liat Huller-Harari, Dr. Tzippi Ivri, Dr. Omi Leissner, Dr. David Mankuta, Dr. Hagit Peres, Prof. Annik Raas-Rothschild, Ari Schick, Atty. Dahlia Shaham-Brender, Dr. Uri Shwed, Dr. Deena-Rachel Zimmerman, Dr. Shlomit Zuckerman, Shachar Zuckerman, Adi Youcht
Israel is a world leader in prenatal diagnostics. At the dawning of the genomic era there was a substantial advance in the ability to perform genetic diagnostics in fetuses. An example is the chromosomal microarray analysis (CMA), a test added recently to the basket of health services in Israel. This test makes it possible to detect tiny structural changes in chromosomes that could not be detected previously. Some of these changes are known to cause illnesses in the fetus; the significance of other changes is still unknown. In the coming years additional tests will be introduced that will make possible a scan of the fetal genome and the detection of genetic changes that are related to genetic diseases, the risk of particular illnesses at a later age, and even various physical characteristics.
This rapid technological development raises many issues beyond the strictly medical aspect: ethical, social, and legal issues. These include the extent of the parents’ right to choose the characteristics of their unborn child, as opposed to the fetus’s right to prevent the disclosure of information regarding its future state of health; a study of the concepts of “normal” and “exceptional” and of the boundary between them; the justified reasons for terminating a pregnancy; and the influence of the use of advanced technology on the status of the exceptional person in society. So far, these issues have hardly been discussed and certainly not to the extent they deserve in the academic world, by the health system, or by the public that would receive these services.
In January 2013 an interdisciplinary research group was established at the Van Leer Jerusalem Institute to examine and analyze the ramifications of advanced genomic technologies that are offered in the course of pregnancy, while comparing the dissemination of these technologies in Israel with that in other countries. The group’s activity will constitute part of the establishment of the Jerusalem Center of Genetics and Society, whose aim is to promote discourse and public knowledge regarding all aspects of genetic information.
The group’s participants include scholars from the biological sciences and medicine, the humanities and the social sciences, sociology, and medicine and law, as well as psychologists and support organizations for people with disabilities. Outside experts in bioethics and psychology will be invited to some of the meetings.