National Genes, Inc.

Going once, going twice, gone! Estonia's gene pool has been sold to the bidder in the front row.

Topics: Iceland,

National Genes, Inc.

Oil shale, peat, phosphorite, clay, limestone, sand, dolomite, arable land and sea mud — those are the natural resources that the CIA World Factbook 2002 attributes to Estonia, a small Eastern European republic on the Baltic Sea.

In the next edition, the American spooks should update their list … with an entry for human DNA.

The newest resources “discovered” in Estonia are the genes of its 1.4 million citizens. The country’s government and a Silicon Valley start-up called EGeen International are treating the Estonian gene pool as a commodity to be exploited for medical research and profit.

EGeen owns the exclusive commercial rights to data from the Estonian Gene Bank Project. In March the bank will begin a full-scale effort to collect blood samples and medical histories that will help scientists understand Estonians from the inside out.

In a pilot effort, the project has already collected 1,000 such samples and histories from the three counties of Tartu, West Viru and Saare. Now, the goal is to persuade the rest of country’s inhabitants that it’s in the best interests of them, their descendants and their countrymen to be decoded for science.

“About 10 percent have said: ‘No way!’ They’re not going to participate,” says Kalev Kask, the CEO of EGeen International, which is based in Redwood City, Calif. “About 30 percent are uncertain or need more information, and the rest are positive. About 30 percent are firm believers.”

With the human genome mapped, DNA information potentially has enormous value to medicine. National efforts to capitalize on that demand, by taking a kind of genetic census, are underway in several countries, including Iceland and Britain. Geneticists and drug companies will use the data in an effort to determine the genetic makeup of everything from high blood pressure to anxiety. The ultimate goal: tailoring drugs and treatments to your personal genetic profile.



Estonia is a test case for understanding how turning the genetic stock of a poor country into a marketable commodity is fraught with social and ethical challenges. To pick just one brave new possibility: Will “bad genes” join gender, race and class as a potential source of discrimination? Estonia has even enacted legislation to address gene policy problems before they happen. As it pushes forward in data-mining its own citizens’ DNA, the country is asking: What rights do people have over their own genes?

Genetic research involves more than just finding the magic combination for the proverbial alcoholism gene.

“We know that there are all sorts of things that are strongly correlated with genetics, but it’s not single genes, it’s complex,” says Gregory Stock, director of the UCLA Program on Medicine and author of “Redesigning Humans: Our Inevitable Genetic Future.”

Teasing out those relationships requires masses of data, and providing that data has proven to be the incentive leading this first wave of countries into the genetic marketplace.

In the rush for biotech global domination a history of political occupation and subjugation can actually be a marketing differentiator. Estonia won its independence from its latest round of conquerors in 1991, when the Soviet Union collapsed. But the country has a long history of being overrun and plundered by others, including the Danes, the Swedes, the Germans, the Poles and the Russians.

“It has had a pretty tough history,” says Kask. “It’s been invaded over and over throughout the past thousands of years, so a typical Estonian is sort of representative of all Europeans.”

Iceland, for its part, boasts about the homogeneity of the DNA of its small population, descended from the Vikings, and its detailed genealogical records, dating back hundreds of years.

Stock sees both countries as “basically trying to market to their strengths.”

In a small population — there are just shy of 280,000 Icelanders — with a shared genetic history, it may be easier to spot relationships between specific genes and a given disease, but that also means that relationship is less likely to apply to people elsewhere.

“You don’t want to waste your time on things that don’t have a broad relevance. If you’re a drug company, they’re not as interesting. But in a more heterogeneous population, it’s more expensive to do the genetics,” Stock says.

But what about the problem of gathering the information? You can either conscript your citizenry’s genes into service in a great, preemptive, patriotic swoop, or you can ask for volunteers for a project that many citizens are not likely to understand.

On the Estonian Gene Bank Project Web site, the FAQ explaining the process to potential donors includes this question: “Will I lose my genes when I become a gene donor?” Answer: “No, certainly not. Genes are in every cell in your body.”

Iceland drew heat from bioethicists around the world, as well as from some citizens within its borders, when it announced that it would adopt an “opt-out” policy for its gene bank. Icelanders would be automatically included unless they specifically chose not to be. Bonus: Even thousands of dead Icelanders would have their genes, genealogical history and medical history cross-referenced and analyzed with their countrymen’s.

Note to self: If you’re already dead, you can’t opt out.

Estonia and EGeen International have gone to great lengths to avoid the controversy swirling around Iceland’s gene project. For starters, Estonia has adopted an opt-in policy in which participants have to volunteer for the project. But the medical ethicists even have their doubts about that.

“Can you really get the voluntary cooperation of everybody?” says Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania. “In Estonia, there is so much enthusiasm on the part of government officials about this as a way to obtain scientific prominence and some degree of fiscal remuneration, it might be hard to say no.”

While participants in the Estonia project agree to give their medical histories and blood samples to the project for free, the doctors recruiting them do not donate their time. About 20 percent of doctors in the country will be trained to fill out a special health questionnaire for the project, according to EGeen. “Those doctors get compensated for the time they spend with the donor,” says Kask, “if such a doctor has a donor who, based on informed consent, agrees to fill in that thorough questionnaire and donate a blood sample to that gene bank.”

But with doctors being paid for bringing recruits into the project, that means your physician could be moonlighting as a gene bank salesman.

The actual data is held not by EGeen International, but by a foundation, which receives funding from EGeen. The hope is that this legal separation will help protect the privacy of the participants even as they give up the most intimate information about themselves, while allowing some of the economic benefits from the commercialization of the data to flow back to Estonia.

The country went so far as to enact a law, the Human Genes Research Act, to govern how data is collected, kept and used by the project.

The act promises participants confidentiality through technology: “The personal data of the gene donor shall be separated from genetic data and each blood sample and set of health data shall be given a unique 16-digit code. Deciphering such a code at the present level of technology is unreal.”

Among its other key provisions: a gene donor can decide whether or not she wants to know her own genetic information. If medical science discovers that your genes dictate that you have an 85 percent chance of developing breast cancer, perhaps you’d rather remain blissfully ignorant. Participants also have the right to terminate their relationship with the project, and extract their information from the database.

For some critics, linking individual genotypes to medical history raises the specter of genetic discrimination, a crime specifically prohibited by the Human Genes Research Act. Theoretically, one could risk being blackballed for health coverage before you even suffer from a disease, just by having a genetically determined propensity indicating that might one day become ill. Kask argues that’s not really an issue in Estonia, where socialized medicine means that everyone is automatically covered, but the lessons learned from Estonian data may one day end up being valuable information for insurance adjusters elsewhere.

Will navigating all these quandaries pay off? It’s too early to tell for EGeen, since it’s still in the start-up phase, spending its first few million dollars of funding from Draper Fisher Jurvetson ePlanet Ventures, Small Enterprise Assistance Funds and venture capitalist Steve Jurvetson’s personal money. Iceland’s deCODE Genetics has suffered financially: After some initial excitement around its public offering, when share prices reached close to $30 a share, the stock is now trading below $2.

But whatever happens with these companies financially, the research that they or others like them do will undoubtedly change the way people everywhere think about the code that makes them who they are.

“I think that there’s going to be a huge stampede in this direction,” says Stock. “Everybody is going to want to look at their genetics. You’re going to want to get a genetic profile.”

More Related Stories

Featured Slide Shows

  • Share on Twitter
  • Share on Facebook
  • 1 of 11
  • Close
  • Fullscreen
  • Thumbnails

    Ten spectacular graphic novels from 2014

    Beautiful Darkness by Fabien Vehlmann & Kerascoët
    Kerascoët's lovely, delicate pen-and-watercolor art -- all intricate botanicals, big eyes and flowing hair -- gives this fairy story a deceptively pretty finish. You find out quickly, however, that these are the heartless and heedless fairies of folk legend, not the sentimental sprites beloved by the Victorians and Disney fans. A host of tiny hominid creatures must learn to survive in the forest after fleeing their former home -- a little girl who lies dead in the woods. The main character, Aurora, tries to organize the group into a community, but most of her cohort is too capricious, lazy and selfish to participate for long. There's no real moral to this story, which is refreshing in itself, beyond the perpetual lessons that life is hard and you have to be careful whom you trust. Never has ugly truth been given a prettier face.

    Ten spectacular graphic novels from 2014

    Climate Changed: A Personal Journey Through the Science by Philippe Squarzoni
    Squarzoni is a French cartoonist who makes nonfiction graphic novels about contemporary issues and politics. While finishing up a book about France under Jacques Chirac, he realized that when it came to environmental policy, he didn't know what he was talking about. "Climate Changed" is the result of his efforts to understand what has been happening to the planet, a striking combination of memoir and data that ruminates on a notoriously elusive, difficult and even imponderable subject. Panels of talking heads dispensing information (or Squarzoni discussing the issues with his partner) are juxtaposed with detailed and meticulous yet lyrical scenes from the author's childhood, the countryside where he takes a holiday and a visit to New York. He uses his own unreachable past as a way to grasp the imminent transformation of the Earth. The result is both enlightening and unexpectedly moving.

    Ten spectacular graphic novels from 2014

    Here by Richard McGuire
    A six-page version of this innovative work by a regular contributor to the New Yorker first appeared in RAW magazine 25 years ago. Each two-page spread depicts a single place, sometimes occupied by a corner of a room, over the course of 4 billion years. The oldest image is a blur of pink and purple gases; others depict hazmat-suited explorers from 300 years in the future. Inset images show the changing decor and inhabitants of the house throughout its existence: family photos, quarrels, kids in Halloween costumes, a woman reading a book, a cat walking across the floor. The cumulative effect is serene and ravishing, an intimation of the immensity of time and the wonder embodied in the humblest things.

    Ten spectacular graphic novels from 2014

    Kill My Mother by Jules Feiffer
    The legendary Pulitzer Prize-winning cartoonist delivers his debut graphic novel at 85, a deliriously over-the-top blend of classic movie noir and melodrama that roams from chiaroscuro Bay City to Hollywood to a USO gig in the Pacific theater of World War II. There's a burnt-out drunk of a private eye, but the story is soon commandeered by a multigenerational collection of ferocious women, including a mysterious chanteuse who never speaks, a radio comedy writer who makes a childhood friend the butt of a hit series and a ruthless dame intent on making her whiny coward of a husband into a star. There are disguises, musical numbers and plenty of gunfights, but the drawing is the main attraction. Nobody convey's bodies in motion more thrillingly than Feiffer, whether they're dancing, running or duking it out. The kid has promise.

    Ten spectacular graphic novels from 2014

    The Motherless Oven by Rob Davis
    This is a weird one, but in the nervy surreal way that word-playful novels like "A Clockwork Orange" or "Ulysses" are weird. The main character, a teenage schoolboy named Scarper Lee, lives in a world where it rains knives and people make their own parents, contraptions that can be anything from a tiny figurine stashable in a pocket to biomorphic boiler-like entities that seem to have escaped from Dr. Seuss' nightmares. Their homes are crammed with gadgets they call gods and instead of TV they watch a hulu-hoop-size wheel of repeating images that changes with the day of the week. They also know their own "death day," and Scarper's is coming up fast. Maybe that's why he runs off with the new girl at school, a real troublemaker, and the obscurely dysfunctional Castro, whose mother is a cageful of talking parakeets. A solid towline of teenage angst holds this manically inventive vision together, and proves that some graphic novels can rival the text-only kind at their own game.

    Ten spectacular graphic novels from 2014

    NOBROW 9: It's Oh So Quiet
    For each issue, the anthology magazine put out by this adventurous U.K.-based publisher of independent graphic design, illustration and comics gives 45 artists a four-color palette and a theme. In the ninth issue, the theme is silence, and the results are magnificent and full of surprises. The comics, each told in images only, range from atmospheric to trippy to jokey to melancholy to epic to creepy. But the two-page illustrations are even more powerful, even if it's not always easy to see how they pertain to the overall concept of silence. Well, except perhaps for the fact that so many of them left me utterly dumbstruck with visual delight.

    Ten spectacular graphic novels from 2014

    Over Easy by Mimi Pond
    When Pond was a broke art student in the 1970s, she took a job at a neighborhood breakfast spot in Oakland, a place with good food, splendid coffee and an endlessly entertaining crew of short-order cooks, waitresses, dishwashers and regular customers. This graphic memoir, influenced by the work of Pond's friend, Alison Bechdel, captures the funky ethos of the time, when hippies, punks and disco aficionados mingled in a Bay Area at the height of its eccentricity. The staff of the Imperial Cafe were forever swapping wisecracks and hopping in and out of each other's beds, which makes them more or less like every restaurant team in history. There's an intoxicating esprit de corps to a well-run everyday joint like the Imperial Cafe, and never has the delight in being part of it been more winningly portrayed.

    Ten spectacular graphic novels from 2014

    The Shadow Hero by Gene Luen Yang and Sonny Liew
    You don't have to be a superhero fan to be utterly charmed by Yang and Liew's revival of a little-known character created in the 1940s by the cartoonist Chu Hing. This version of the Green Turtle, however, is rich in characterization, comedy and luscious period detail from the Chinatown of "San Incendio" (a ringer for San Francisco). Hank, son of a mild-mannered grocer, would like to follow in his father's footsteps, but his restless mother (the book's best character and drawn with masterful nuance by Liew) has other ideas after her thrilling encounter with a superhero. Yang's story effortlessly folds pathos into humor without stooping to either slapstick or cheap "darkness." This is that rare tribute that far surpasses the thing it celebrates.

    Ten spectacular graphic novels from 2014

    Shoplifter by Michael Cho
    Corinna Park, former English major, works, unhappily, in a Toronto advertising agency. When the dissatisfaction of the past five years begins to oppress her, she lets off steam by pilfering magazines from a local convenience store. Cho's moody character study is as much about city life as it is about Corinna. He depicts her falling asleep in front of the TV in her condo, brooding on the subway, roaming the crowded streets after a budding romance goes awry. Like a great short story, this is a simple tale of a young woman figuring out how to get her life back, but if feels as if it contains so much of contemporary existence -- its comforts, its loneliness, its self-deceptions -- suspended in wintery amber.

    Ten spectacular graphic novels from 2014

    Through the Woods by Emily Carroll
    This collection of archetypal horror, fairy and ghost stories, all about young girls, comes lushly decked in Carroll's inky black, snowy white and blood-scarlet art. A young bride hears her predecessor's bones singing from under the floorboards, two friends make the mistake of pretending to summon the spirits of the dead, a family of orphaned siblings disappears one by one into the winter nights. Carroll's color-saturated images can be jagged, ornate and gruesome, but she also knows how to chill with absence, shadows and a single staring eye. Literary readers who cherish the work of Kelly Link or the late Angela Carter's collection, "The Bloody Chamber," will adore the violent beauty on these pages.

  • Recent Slide Shows

Comments

0 Comments

Comment Preview

Your name will appear as username ( settings | log out )

You may use these HTML tags and attributes: <a href=""> <b> <em> <strong> <i> <blockquote>