Israel Chief Scientist Avi Hasson said at the IATI Biomed 2015 conference that Israel plans to set up a government-authorized genetic database. The details of the initiative have not yet been finalized, and the initiative is not yet officially underway, but meetings have been held with a number of think tanks that are examining what the potential hurdles might be in setting up such a database, and how they may be dealt with.
Office of the Chief Scientist (OCS) Head of Life Sciences Dr. Ora Dar added that the matter is currently being examined and formulated by the OCS’s Telem, the national infrastructure forum for research and development. A think tank led by senior EMC executives was behind the initiative, but it is not yet clear who will manage the database. Upon the completion of the examination, Telem and the OCS are expected to put out a call for applications from organizations interested in managing the database.
In Israel, every person has a medical record at one or more of the health funds, which is associated with his or her ID number, from birth until death. In this regard, Israel is uniquely positioned to develop clinical databases. Currently, the task at hand is to gather DNA samples from citizens, and associate them with the clinical data. This is tremendous challenge, both because of regulatory and ethical issues of protecting the citizens’ right to privacy, and because of the logistical and budgetary challenge involved in gathering the samples and carrying out the chemical tests to determine the genetic sequences (which currently costs roughly $1000 per sample).
Weizmann Institute molecular geneticist Prof. Michel Revel took part in outlining the plan. Prof. Revel, one of the developers of Rebif (marketed by Merck Serono), is among the founders of Kadimastem, and serves as chairman of Israel’s National Bioethics Council. Revel’s committee will seek to understand the ethical consequences of operating the database.
In light of the regulatory and ethical challenges, it has been decided that, at first, the database will be open only to patients who are very interested in having their samples included and in the existence of the database - only later will there be an attempt to sell the idea to the general public. The assumption is that the first participants will be patients suffering from rare genetic diseases, who hope that the research carried out using the database will improve their personal situations. A few hundred samples from patients suffering from a particular disease are sufficient for significant research to take place.
Big healthcare and IT companies have already expressed interest in participating in the project.
Published by Globes [online], Israel business news - www.globes-online.com - on May 18, 2015
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