Israel has become the latest country to disclose plans to create a population-scale database of linked genetic and clinical records. The current plan is reminiscent of the United Kingdom's 100,000 Genomes Project, with Israel considering working with tech firms to create a database of patients with rare genetic diseases.
Globes reports Israel Chief Scientist Avi Hasson outlined plans for a government-authorized database at IATI Biomed 2015. Work is yet to start officially on the project, but the government is talking to think tanks to understand the barriers to setting up such a resource and how they can be overcome. The current concerns relate to the regulatory and ethical issues surrounding patient privacy and the logistical and financial headaches associated with sequencing the genomes of large numbers of people.
Hasson plans to sidestep some of the biggest questions by limiting the first phase of the database to people who are very interested in contributing their DNA. The expectation is that this will skew the database toward rare genetic diseases. In doing so, Israel would delay the need to persuade the population of the merits of the database and limit the cost of the first-wave of sequencing. Genomics England took a similar approach to the 100,000 Genomes Project, which is limiting its scope to cancer and rare diseases.
There are other parallels between the two projects. Israel and England both have centralized, cradle-to-grave medical records and plan to link them to the genetic data. Such work is beyond the scope of national governments and Israel has reportedly already been approached by as yet unnamed large healthcare and IT companies that are interested in taking part in the project. Illumina ($ILMN), as the seller of the HiSeq X Ten system that made population-scale sequencing viable, is an obvious potential contributor to the Israeli initiative.
Officials in the Israeli government and a think tank are still some way from striking deals, though. The next step is to wrap up preliminary preparations and initiate a call for applications to find organizations that want to manage the resource.
- read Globes' article