By Monica Heger
The Faroe Islands hopes to become the first nation to offer full human genome sequencing to all of its 50,000 citizens.
Bogi Eliasen, a program director at the Faroese Ministry of Health, announced the project, dubbed FarGen, at last weekend's Personal Genomes conference at Cold Spring Harbor Laboratory in New York.
The country is beginning with a 100-person pilot in order to address the scientific, technical, social, legal, and ethical questions raised by the project. For the pilot, only adults will be included, and the results will not be returned. "We don't feel we are ready for that," Eliasen said at the meeting.
The full project is expected to cost around 257 million Danish kroner ($47 million), and the islands, which are a self-governing territory within the Kingdom of Denmark, will receive some support from Illumina. Additionally, the project will involve researchers at Baylor University and the University of Oxford.
When the project is fully implemented, participants' whole-genome sequence data will be linked to their health records. The Ministry of Health will not be clinically annotating each individual's genome, but will do so when queried by a physician for a specific medical purpose.
"There has to be a precise request for a test," Eliasen explained. A physician can "only ask for what is suspected. … Of course there are some grey areas that we are discussing."
Additionally, because individuals have a right to access their own medical records, participants could access their sequence data and have it interpreted privately.
Eliasen said that there is broad support for the project, and that the population of the Faroe Islands has a good understanding and acceptance of genetic tests because of the high prevalence of genetic disease on the island. About one in 25 people are carriers of the genetic disease carnitine transporter deficiency, or CTD, a metabolic disorder that arises either in infancy or early childhood. The disease is treatable, but if not diagnosed, can cause heart failure and death in children.
A recent spate of deaths in the country due to the disease served to increase the public's awareness of genetic disease and the desire for preventative measures, Eliasen said.
To help address the issue of informed consent, the country will put in place a broad genetics and genomics education plan that will begin in first grade and extend through high school, to "empower the individual," Eliasen said.
Several specific aspects about the country make it an ideal testing ground for implementing broad genomic sequencing, Eliasen said. The population is small, which helps to reduce the technical and cost challenges. Additionally, he said, everyone has access to health care, and there are no issues with class or race, which could be problematic in other countries.
If successful, Eliasen said the Faroe Islands could serve as a global model for implementing whole-genome sequencing into a healthcare system.
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