Far out.
The entire Faroese population can have its genome sequenced free
Wikimedia Commons / TUBS
inhabitants of the Faroe Islands could become the first World population to offer whole genome sequencing for free, researchers announced at a meeting on personal genomes at Cold Spring Harbor Laboratory last week. The project, called Fargen, aims to sequence the entire genome of each citizen and use information for health care and research in the autonomous Danish dependency. A pilot project sequencing the genomes of 100 individuals is ongoing; if money can be found, the remaining 50,000 Faroes could follow over the next five years, scientists say.
Under the program, participants in the archipelago of 18 islands would not get individual reports, but their genome sequence would be linked to their medical records. "Doctors can then request the information when needed," says Bogi Eliasen, a political scientist at the Department of Health Faroese who runs the program. In this way, scientists hope to minimize the chances of people accidentally discovering the information they do not want to know and work around some of the ethical issues surrounding genetic testing. However, freedom of information act gives citizens access Faroese to their medical records, so that anyone truly interested in their sequence could get even .
researchers in other countries, such as Iceland, Estonia and the UK are currently building national genetic biobanks. Fargen presents particular similarities to the project launched by deCODE genetics ., a company in Reykjavik, hunting for disease genes in Icelanders But deCODE, a commercial project, has experienced financial problems, political and legal; some of his plans were approved by the Supreme Court and ice. Eliasen expects fewer problems on the Faroe Islands. The islands had a heated debate on the issue, which began in 1999, when the territory deCODE approached with a plan to include the population in his hunt for genes. This idea was rejected, but the debate resulted in a 05 law allowing the construction of a data bank Faroese, said Eliasen.
In 09, the islands have also launched a public effort to identify people with carnitine deficiency carrier (CPC), a disease that can lead to sudden death in young adults and is a hundred times more common in isolated people Faroese population than elsewhere. Almost half of citizens were deliberately selected for the genetic defect, which can be treated by supplementing carnitine. The first five genomes sequenced by Illumina, a sequencing company that manufactures machines and is involved in the project will be people with CTD.
Scientists hope that the new project will give an overview of various other diseases and population genetics of the Faroe Islands. "This project is first and foremost on improving health care for all citizens, but of course it will be very valuable for research as well," said Eliasen. The project cost would be about 50 $ millions, if sequencing prices continue to fall at the current rate. so far, we do not know where most of the money will come from, though.
scientific value of the project will depend on how many citizens sign for it, warns Markus Nöthen geneticist from the University of Bonn in Germany. "This is a bold step, but it will only succeed if enough people participate," he said. but Hans- Hilger Ropers, director at the Max Planck Institute for molecular genetics in Berlin, said it would be much cheaper and more useful scientifically to focus on patients with certain diseases. "as it is, the biggest advantage of the project can demystify the genome identifying many variations that are common in healthy adults and have little or no clinical relevance, "he said.
Ropers is convinced that other rich countries will follow suit, however, and that such projects are needed. "They will lay the groundwork for the expected implementation of sequencing the genome as a universal diagnostic test for genetic risk," he said.
While the Faroe Islands have many factors promoting implementation, including a national health care system with medical records digitized, small government, centuries worth of detailed genealogical information and a public Risk- informed genetic test there are still obstacles. How Faroese data will be open for research while protecting the information on individuals are not clear, for example. One of the objectives of the pilot phase is to find ways to ensure privacy, said Eliasen. "We are certainly not planning a Faroese Facebook genomics."
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