TORSHAVN, Faroe Islands – The tiny, windswept 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.
Like an ethical petri dish, the Gulf Stream-warmed Faroes are incubating debate about issues of privacy, ownership and the utility of making each patient’s complete DNA makeup accessible in everyday medical decisions.
Questions include how to protect information, when it’s appropriate to use and whether it might heighten discrimination against the mentally ill and 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.
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 in 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 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 in the islands, has experience that made her a supporter of the project, called FarGen.
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 suffered a sudden, unexplained death at the age of 24 that might have been caused by CTD, her cousin’s child was affected, and later, an uncle was diagnosed with the disease.
She became concerned about her twin daughters’ constant, debilitating fatigue about the time they turned 14. Even reading a book was too tiring for them.
They couldn’t concentrate, said Eldevig. They would say, Mama, you read the next page, I’m too tired.’
Eldevig insisted her daughters get tested. Since they were diagnosed, Eldevig’s girls take carnitine tablets several times a day that keep their cells from starving. They’re careful about vigorous exercise. Today, they’re back to gymnastics and other sports.
Now her girls say they don’t want to marry a Faroese boy because of the risk their children will have the disease. They don’t like feeling tired or having to take medication.
While Eldevig thinks they’ll change their minds as they get older, her two other children have a 50 percent chance of being carriers of the disease; she’d like to know whether they are. Carriers are at elevated risk of miscarriage, and Eldevig had one herself. Because FarGen will help identify couples at risk of having a child with CTD, Eldevig has become a supporter of the project.
Bogi Eliasen, the political scientist spearheading FarGen, has brought executives from Illumina Inc., the biggest maker of the sequencers that decipher DNA molecules, to visit the country and spend time on the North Atlantic Ocean, which almost everyone on these islands can walk to from their front door.
Faroese Prime Minister Kaj Leo Holm Johannesen, a former fisherman, said he would like to be one of the first sequenced and has proposed budgeting $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 up to $100 million.
The genome era is coming, whether we like it or not, he said. We need to see how we can make it work here. Of course there is an interest in research. But my approach has always been, what can we use it for?
The power of the human genome – the unique depth of information that its 6 billion chemical letters provide – pose new challenges to scientists and doctors who want to access the code. Studies suggest a full DNA sequence alone might provide enough clues to allow determined sleuths to identify its owner.
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 for DNA data just in case.
The law of the islands says that if scientists collect genetic data on citizens, it must be kept in a secure database where it will be available for clinical use. The DNA data will only be shared with patients through a doctor who provides a reason for accessing it.
The whole genome has too much ambiguous information that doctors don’t yet understand for it to be handed over to patients, Eliasen said.
The same concerns face large-scale DNA analysis projects that governments are starting around the globe.
The U.S. Department of Veterans Affairs is gearing up to sequence the genomes of 1 million of its members and recently announced signing up 100,000 volunteers. Britain said in December that it plans to sequence the genomes of 100,000 people for research purposes. And the Canadian government is working with Harvard Medical School to sequence genomes of citizens and offer them for public use.
While Eliasen plans to keep individuals from accessing their own genomes, that plan may not be realistic, said George Church, a Harvard Medical School geneticist who started the Personal Genome Project, which makes individuals’ DNA sequences public for researchers’ use.
Once the Faroese system goes live, Faroese people may ignore the law and demand their genetic information, he said.
It’s like medical marijuana, Church said in his office in Boston. Are you just going to say no?
And their parliament’s legal protections, many Faroese say their country’s legal safeguards don’t answer all their concerns about FarGen.
Runa Sivertsen, a former member of the Faroese parliament and the head of a group that advocates on behalf of patients with a genetic condition called glycogen storage disease, said there has been virtually no national discussion of the project.
At first I felt bad because I didn’t know about it. Then I called a number of other people, and none of them knew anything about it, either, Sivertsen said, sitting in her shop in Klaksvik, a fishing village, where she sells folk art to benefit orphans in Liberia and Senegal.
It may be a good thing, but it’s not good that people don’t know about it.