Should Doctors Get Your DNA?

Estonia pushes to share genetic data with the health system. Is it ethical?

Inside the basement of a non-descript building in Tartu, Estonia, sits the collected DNA of 52,000 people – 5 percent of this tiny country's entire population. The genetic information was collected voluntarily and now is stored, frozen, inside big, stainless steel tanks of liquid nitrogen.

Since the Estonian Genome Project kicked off in 2002, this genetic information has been used by academic researchers from many countries to identify genes connected with rare diseases and to help trace the genetic ancestry of the people of Estonia, a tiny Baltic nation of 1.3 million residents.

For example, last year, medical researchers here notified about 20 Estonians who had a rare form of mental retardation linked to several genes, but who had no family history of the disorder.

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But now the scientists here plan to go a big step forward by sharing the entire genetic code of 2,500 people with their family doctors and the entire Estonian health care system.

This subset of people in the Estonian "biobank" have had their entire genotypes sequenced. The results could reveal if they are at risk from one or more common diseases such as gene-linked cancers, cardiovascular disease and some mental health disorders, for example, or rarer medical conditions.

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Andres Metspalu, director of the Estonian Genome Center University of Tartu, says the idea is to allow patients to get a head start on preventing disease.

"We can predict disease before the people get sick and then you can do something, either change the lifestyle or take a pill," Metspalu said.

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Metspalu said the information could help patients with a future high risk of coronary heart disease to take statin drugs, for example.

"The impact of genetics is much higher than cholesterol or blood pressure," Metspalu said. "This is what we want to introduce."

Patients can opt out of the program, which is expected to begin sometime next year after final approval by the Estonian parliament. Other countries, such as the United Kingdom and Iceland, have built large-scale genetic biobanks containing troves of DNA collected from their residents.

The UK Biobank is focused on research, while Iceland's is used by pharmaceutical companies. This would be the first time that a country has decided to connect an individual's genetic information with health providers.

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Estonia has put in place strong anti-discrimination and privacy laws, but some ethical experts aren't sure if it will make a big impact. That's because the idea of "personalized medicine" (also known as "precision medicine" ), in which genetic data is used to predict how some people will react to certain medicines, is still a work in progress.

"We are not quite ready to launch the genomic medical revolution, not in Estonia, not anywhere," said Arthur Caplan, a bioethicist at New York University School of Law. "We may be in five or 10 years. But now, all you have to do is watch your diet and do other things for your health."

Caplan said the Estonian genetic testing and sequencing program will put the country in the driver's seat once personalized medicine overcomes various technological and scientific obstacles.

"The upside is that it now has an integrated system and they aren't going to penalize anyone when they find medical conditions," he said. "Estonia is also in a good position to teach doctors how to interpret those genetic tests; we don't have that here [in the United States]."

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Genetic testing on a large scale seems unworkable in the United States for now because of privacy laws and persistent fears that employers or insurance companies will use the data to fire people or drop their coverage, he noted.

Estonia has a national health-care system that uses integrated medical records between doctors, hospitals and pharmacies. Patients log in to a web-based portal and can see everything from their prescriptions to X-ray images.

Estonian society is unique because people have developed trust in how government handles their information. Everyone is issued a secure ID card that also requires an individual password to access medical, financial and tax data. It's also one of the few countries that successfully votes online.

Aside from a 2007 shutdown of Estonia's federal website by suspected Russian hackers, the country hasn't experienced credit-card theft on a big scale, or loss of government data such as the theft of personal data of 21.5 million federal workers from the U.S. Office of Personnel Management in 2015.

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"Everywhere we have lessons on how to make these services reliable and build up people's trust," said Erkki Leego, an IT adviser to the Estonian Genome Center and the country's electronic health system.

Leego says that the privacy of genetic data and other personal information has been maintained by building a secure information infrastructure that so far seems to work.

"In many countries people just block their ears when they talk about sharing private data," Leego said. "They don't even think about how to do it."

Dan Bogdanov, a data researcher at the Tallinn-based firm Cybernetica, says digital privacy of health records is no longer an abstract concept.

"No longer can we say there's nothing we can do about this," he said.