In an effort to prevent future illnesses, Estonia has launched a programme to provide 100,000 of its 1.3 million residents with free genetic testing and counselling services. The move has been labelled controversial, with critics claiming information about disease risk could cause unnecessary anxiety in some individuals.
Estonia is the first nation to offer its citizens state-sponsored genetic information and advice. The programme is a joint initiative of the Ministry of Social Affairs, the National Institute for Health Development and the University of Tartu’s Estonian Genome Centre, which is hosting the service.
The government has budgeted €5 million for the initiative in 2018, and began official sample collection on Monday. In return for DNA samples, the Estonian government will provide participants with information about their genetic risk for particular diseases along with health and lifestyle advice based on their results.
“We want to invest in preventing or delaying the onset of common chronic diseases by using genetics to identify people at high risk,” Jevgeni Ossinovski, Estonia’s minister of health and labour, told New Scientist. Ossinovski said Estonia intends to eventually have the genetic data of all of its residents stored in a national biobank.
Participants’ DNA will be tested for over 600,000 genetic variants associated with common diseases, including cancer, heart disease and high cholesterol. Another 100,000 variants will be analysed for reactions to 28 commonly prescribed drugs, as well as for rare diseases.
Critics have raised concerns that access to such information could cause unnecessary worry for the individuals involved. Hugh Whittall, of the UK Nuffield Council on Bioethics told New Scientist, “This may well create more questions than answers for those who take part, and in some cases great anxiety.”
Whitall also pointed to the numerous privacy and security issues associated with the project. “There must be measures in place to protect this data, and to tell participants how their data might be used, and which third parties might have access to it,” he said.
In the United States, there have been concerns that at-home DNA testing companies such as 23andMe and Ancestry do not adequately protect sensitive customer data. In November, Senator Chuck Schumer told reporters, “There are no prohibitions, and many companies say that they can still sell your information to other companies.” Schumer emphasised that at-home DNA testing is a new business model that requires additional regulations to ensure customers are protected.
However, laws in Estonia protect patients from having their genetic data used for unauthorised purposes. The 1999 Estonian Human Genes Research Act states that genetic data belongs only to the individual who submitted it and allows Estonian citizens to have control over which studies they want to participate in, according to Futurism.
Ossinovski assured the information collected by the programme would be highly secure. He said that in order to prevent third parties from accessing or exploiting participants’ sensitive information, the data would be anonymised and coded.
If the programme in Estonia is successful, it could provide a model for other countries seeking to expand preventive healthcare and personalised medicine. Countries including the United Arab Emirates and Iceland have already announced plans to sequence the DNA of significant portions of the population.