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Gene sequenced nation

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THE 50,000 inhabitants of the Faroe Islands, a self-governing dependency of Denmark, may soon be the first nation to be offered full genome sequencing and thus the possibility of a new era of personalised medicine.

A pilot project known as FarGen has already sequenced the genomes of the first 100 individuals and the aim is for the rest of the islanders, who are genetically fairly homogenous, to follow during the next five years.

The scientists hope to avoid some of the ethical issues, such as privacy, security and interpretation, by linking the information to the participants’ medical records and making it accessible to their doctors.

The project is reported to be costing US$47m. Although it will be free to the islanders, some are concerned that if the sequence is “hidden” in a personal health file it will be meaningless data and useless for research. But if the sequence is offered to the scientific community in open databases to recoup the project’s costs — as they suspect it will — there is a high risk that employers, insurance companies or a political system might be able to use it against participants or even their progeny.   

However, there is at least one potential benefit to gene sequencing the islanders. In 2009, some of the islanders were voluntarily screened for a treatable genetic defect, carnitine transporter deficiency, which can lead to sudden death in young adults and is a hundred times more common among the isolated Faroese population than elsewhere. It is an autosomal recessive disorder involving mutations in the SLC22A5 gene and leads to inadequate levels of carnitine, without which fats are not converted into energy.

Scientists are hoping this new project will give them a better insight into this and various other conditions while perhaps helping to demystify the genome by identifying the many common variants that have little clinical relevance.

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