Estonia will screen nearly one-tenth of its population's DNA in a controversial move to assess their disease risk

  • Some 100,000 of the 1.3 million residents will provide blood samples
  • Project aims to provide lifestyle advice and preventative measures to people
  • Critics argue the programme could cause some participants 'great anxiety'
  • Scientists maintain the information will be secure and made anonymous 
  • DNA will be analysed for more than 600,000 DNA variants linked to diseases

Estonia will screen nearly one-tenth of its population's DNA in a controversial move to assess their disease risk.

Some 100,000 of the country's 1.3 million residents will provide blood samples to determine their genetic information in a programme funded by the state.

The aim of the project is to provide lifestyle advice or preventative measures to reduce at-risk people's likelihoods of becoming ill.

Yet, critics argue the programme could cause unnecessary anxiety.  

In the UK and Ireland, biobanks store donated DNA samples, which are usually collected for medical research. 

Those who donate their DNA in the UK or Ireland are legally banned from receiving information on it, even if they are found to have a higher risk of illness. 

Estonia will screen nearly one-tenth of its population's DNA  to assess their disease risk (stock)

Estonia will screen nearly one-tenth of its population's DNA to assess their disease risk (stock)

ARE MAIL-ORDER GENETIC TESTS ACCURATE?

An analysis released in March 2018 suggests at-home genetic tests assessing people's cancer risks are inaccurate 40 per cent of the time.

Such tests, like the recently US-approved version by 23andMe, are intended to detect mutations in the BRCA1 and BRCA2 genes, which are associated with a higher risk of breast, ovarian and prostate cancer.

Yet, an analysis by Ambry Genetics, a company that interprets data from consumer DNA tests, found that nearly half of the results supplied in the past month from various other firms were false positives.

As a result, at least seven people were given an unnecessary scare, adding yet another reason to question the reliability of such tests that the FDA already warned is 'seriously limited'.

The report, published in the journal Nature, is based on data from 49 people who had already received such test results.

Their DNA was retested and analysed by Ambry Genetics and multiple other laboratories. 

More than half of the false positives participants received were for BRCA mutations.

An estimated one in 300-to-800 Americans have BRCA mutations, which are commonly known as the 'Angelina-Jolie gene' due to the actress having a double-mastectomy in 2013 after discovering she inherited the mutation from her mother.

Specific inherited BRCA mutations have most closely been linked to an increased risk of developing breast and ovarian cancers, but have also been associated with heightened risks of other forms of the disease.

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'This may create great anxiety'  

Jevgeni Ossinovski, Estonia's minister of health and labour, told New Scientist: 'We want to invest in preventing or delaying the onset of common chronic diseases by using genetics to identify people at high risk.'

He adds the country plans to one day have a national biobank and Health Information System that contains the genetic information of every inhabitant.

Yet, Hugh Whittall, from the UK Nuffield Council on Bioethics, argues: 'An offer of free genetic profiling may seem tempting but the information is often difficult to interpret, particularly in relation to risk of serious conditions. 

'This may well create more questions than answers for those who take part, and in some cases great anxiety.'

Mr Whittall adds policies must be in place to protect data, as well as ensuring participants are informed as to how their information may be used and be whom.

According to Mr Ossinovski, who is the first to take part in the trial and is donating his blood today, the information collected will be highly secure, made anonymous and coded to prevent third-party access.

How the research will be carried out  

Each of the participants' DNA will be analysed for more than 600,000 variants linked to common diseases, such as heart disease, cancer and high cholesterol.

More than 100,000 additional variants will be screened for rare diseases or reactions to 28 common drugs, like codeine and warfarin.

Although still under discussion, the participants are thought to be able to chose how much information they would like to receive on their health. 

If they choose to be told their disease risk, their GP will be informed first and will counsel them on what the results mean and if they have any treatment or prevention options. 

Within 48 hours of the programme's launch on March 20, 10,000 people had applied to take part, according to Lili Milani, from the Estonian Genome Center, which is carrying out the research.