TORSHAVN, Faroe Islands
The tiny Faroe Islands, located halfway between Scotland and Iceland, are so barren that their 50,000 inhabitants import almost everything except fish and sheep. Now the Faroes want to leap to the frontier of genetic medicine.
A proposed plan would decipher the complete DNA sequence of every citizen, from its fishermen to the prime minister, using the data for medical treatment and research. Scientists already see the Faroes becoming a model for the use of human genomes.
“We’re feeling our way right now to figure out if this new technology can really benefit individual patients and populations,” said James Evans, a geneticist at the University of North Carolina at Chapel Hill. “It’s really important that they do it right.”
The plan has sparked debate about privacy, ownership and the utility of making each patient’s DNA makeup accessible in everyday medical decisions. Questions range from how to protect information, when it’s appropriate to use and whether it might heighten discrimination against people with inherited diseases.
“They’re going to have to deal with the reality that with whole genome sequences, people will inevitably find out things that they don’t wish to know,” said Evans, who isn’t associated with the Faroes project. “They’re guaranteed to find some mutations that predispose people to untreatable, unpreventable and severe disease.”
Faster, cheaper analysis of DNA, the molecule that transmits an organism’s structural information from one generation to the next, is transforming biological research and medicine. Genome variations are giving new clues to potential causes and treatments for rare and common diseases.
Bogi Eliasen, a political scientist who has become a fixture at genetic conferences worldwide, is spearheading the project, called FarGen.
‘The genome era is coming’
Faroese Prime Minister Kaj Leo Holm Johannesen said he would like to be one of the first sequenced and has proposed budgeting 12 million Danish kroner, or $2 million in support. That’s a princely sum for this self- governing community of Denmark with an economy of about $2.1 billion. Eliasen estimates the project could take about 10 years to complete and cost as much as $100 million.
“The genome era is coming whether we like it or not,” he said. “But my approach has always been, what can we use it for?”
Settled by wayward Vikings in the ninth century, the small size and isolation of the Faroe Islands have given rise to a population that’s vulnerable to disorders caused by recessive genes. One called, carnitine transporter deficiency, is 1,000 times more common in the Faroes than the rest of the world.
Recessive genetic diseases often hit without warning, because each parent harbors a piece of DNA that, by itself, doesn’t generally cause symptoms. Affliction occurs when a child inherits the same flawed DNA string from both parents.
Elisabeth Eldevig, who owns three fishing boats with her husband, became concerned about her twin daughters’ debilitating fatigue about the time they turned 14. For years, there were signs that Eldevig’s family was susceptible to carnitine transporter deficiency, a potentially lethal genetic disease that interferes with cells’ ability to use fuel. Eldevig’s aunt died suddenly at age 24; her cousin’s child and an uncle were affected.
Since her daughters received diagnoses, they take carnitine tablets several times a day that keep their cells from starving. And because FarGen will help identify couples at risk of having a child with CTD, Eldevig has become a supporter of the project.
The genome contains so much information about individuals — who they’re descended from and their risks of certain diseases — that some citizens are concerned about the project. Ten years ago, an Icelandic company asked the Faroese parliament to contribute DNA to a database aimed at discovering new drugs. While the parliament refused, it passed legal protections that says that DNA data will be shared only with patients through a doctor who provides a reason for accessing it.
‘People don’t know about it’
The power of the human genome — the unique depth of information that its 6 billion chemical letters provide about individuals — pose new challenges to scientists and doctors.
The same concerns face DNA analysis projects around the globe. The U.S. Department of Veterans Affairs is gearing up to sequence the genomes of 1 million of its members. Britain said it plans to sequence the genomes of 100,000 people. The Canadian government is working with Harvard Medical School to sequence genomes of citizens and offer them for public use.
Many Faroese say their country’s legal safeguards don’t answer all their concerns. Runa Sivertsen, a former member of the Parliament, leads an advocacy group for patients with glycogen storage disease; the islands have the highest known prevalence of a subtype of the disease. She said there has been virtually no national discussion of the project. “It may be a good thing, but it’s not good that people don’t know about it.”
In the next three months, the Faroes will have a sequencer set up, technicians will be trained to run it, samples will be collected and, by year’s end, the first DNA results will go into the databank. With that, the era of genome-based treatment in the Faroes will begin.
Sigurd Vang, director of the National Hospital in Torshavn, suggest that people will be willing to sign on to FarGen. He said, “We’re quite used to seeing the horizon.”