Bloomberg News

Faroes’ 50,000 Residents Leap Into DNA Testing Quagmire

February 25, 2013

Faroes’ 50,000 Residents Leap Into DNA Testing Ethical Quagmire

Photographer: Kimberley Coole

The Faroe Islands, a tiny, windswept land halfway between Scotland and Iceland, is so barren its 50,000 inhabitants import almost everything except fish and sheep. Now it wants 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 range from 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.”

New Clues

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. As thousands of people begin having their genomes sequenced, variations are giving new clues to potential causes and treatments for both rare and common diseases.

Bogi Eliasen, the blond, blue-eyed political scientist who’s spearheading the project, called FarGen, has become a fixture at genetic conferences worldwide and has gained collaboration from top minds in the field, including James Watson, the co-discoverer of the structure of the DNA molecule.

Working at his small office in an outbuilding next to the main hospital in the Faroes capital, Torshavn, Eliasen has received Watson’s hand-written letters, scanned into a computer and attached to an e-mail, encouraging him to go forward with the project.

Eliasen has brought executives from Illumina Inc. (ILMN:US), 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.

Prime Minister

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 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 in an interview, as winter’s early afternoon darkness gathered outside his window. “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?”

Wayward Vikings

Settled by wayward Vikings in the 9th 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 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 FarGen. 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.’”

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 due to CTD, her cousin’s child was affected, and later, an uncle was diagnosed with the disease. Eldevig insisted her daughters get tested.

Simple Treatment

Treatment for CTD is relatively simple. 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.

Citizens’ Concerns

Because the genome contains so much information about individuals -- who they’re descended from and their risks of certain diseases -- 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 Faroes parliament refused, it passed legal protections for DNA data that remain in force.

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 whole genome has too much ambiguous information that doctors don’t yet understand for it to be handed over to patients, Eliasen said. The Faroes DNA data will only be shared with patients through a doctor who provides a reason for accessing 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 who want to access the code. Studies suggest that a full DNA sequence alone might provide enough clues to allow determined sleuths to identify its owner.

DNA Worldwide

The same concerns face large-scale DNA analysis projects that governments are starting around the globe. The U.S. Veteran’s Administration is gearing up to sequence the genomes of 1 million of its members and recently announced signing up 100,000 volunteers. The U.K. said in December that it plans to sequence the genomes of 100,000 people for research purposes. 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 Faroes 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?’”

Legal Safeguards

Many Faroese say their country’s legal safeguards don’t answer all their concerns about FarGen. Runa Sivertsen, a former member of the Faroes 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.”

Widespread genetic testing affects the counseling doctors give pregnant patients whose fetuses have disability-related mutations, said Sigrun Wardum, chairwoman of Javni, a Faroese group that advocates for youth with disabilities.

The use of tests, such as those made by Sequenom Inc. (SQNM:US), Verinata Health Inc. and LifeCodexx AG, that can detect fetal DNA in a mother’s blood has already set off charges that faster, less-invasive testing techniques are leading to the systematic eradication of people with Down syndrome and similar genetic conditions.

Medical Decisions

“In most cases with mental disabilities, I can’t imagine other decisions than abortion” would arise through counseling, said Wardum, whose 28-year-old son is mentally retarded and lives in a group home.

FarGen has been promoted in press releases, reported on internationally in newspapers and websites and discussed at several public meetings, Eliasen said. The most recent one in September had about 80 participants, which he deemed an encouraging turnout. He said he’s still working to educate the population about the project and will probably have to do so for some time.

“It’s an ongoing process, you’ll never finish to do the outreach on this,” he said.

Gene Sequencer

In the next three months, the Faroes will have a powerful new sequencer set up in a renovated beverage building, Eliasen said. Technicians will be trained to run it, samples will be collected and, by the end of the year, the first DNA results of the project will go into the databank. With that, the era of genome-based treatment in the Faroe Islands will begin.

The effort will bring home the health technology that Faroese residents now fly hours to get, said Sigurd Vang, director of the National Hospital in Torshavn.

“Our ambition is to do as much as we can at home,” he said. “We want to bring expertise here, and that expertise will breed more expertise.”

Vang, who has been friends with Eliasen since grade school, comes from a traditional Faroese background and spent teenage summers fishing on a long-line boat. The volunteer, pioneering spirit of the islanders, coupled with their unique health problems, suggest that people will be willing to sign on to FarGen, Vang said.

“We’re quite used to seeing the horizon,” he said.

To contact the reporter on this story: John Lauerman in Boston at jlauerman@bloomberg.net

To contact the editors responsible for this story: Jonathan Kaufman at Jkaufman17@bloomberg.net


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Companies Mentioned

  • ILMN
    (Illumina Inc)
    • $131.05 USD
    • -0.89
    • -0.68%
  • SQNM
    (Sequenom Inc)
    • $2.5 USD
    • -0.02
    • -0.8%
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