The Estonian government plans to provide free DNA-based lifestyle advice for 100,000 of its 1.3 million residents. It will be the first nation to provide a state-sponsored personal genetic information service 鈥� but some have warned that this might cause unnecessary worry for those who find out they have an elevated risk for certain diseases.
The goal of the initiative is to prevent or minimise future illnesses by giving forewarning to people whose genes put them at extra risk of conditions like cardiovascular disease and adult-onset diabetes. Given early warning, such people could then choose to adopt healthier lifestyles, and take preventative measures such as statin drugs, to reduce their risk of developing these conditions in the future.
Each participant鈥檚 DNA will be analysed for more than 600,000 DNA variants that have been linked to common diseases. As well as heart disease and diabetes, the analysis will also screen for BRCA mutations linked to breast and ovarian cancer, and DNA variants associated with high cholesterol.
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The analysis will also look for more than 100,000 other variants that have been associated with rare diseases or adverse reactions to 28 common medicines, including warfarin, codeine, and some commonly prescribed antidepressents. The team behind the initiative hope to add other elements to the analysis in future.
Choose your results
The details are still being decided, but people will most likely be able to tick boxes to say what kinds of results they would like to receive, because some people prefer not to know certain kinds of information. For example, a person could choose to know their risk for common diseases, drug side effects, and rare disorders, but could opt out of any feedback about聽their risk of developing certain cancers or whether they聽might pass genetic disorders on to their kids.
When a person wants to know their results, their family doctor will be told first, and will then counsel them about what the DNA data means, and any options they may have.
Similar information is currently available commercially, through companies like California-based 23andMe. Several countries 鈥� including the UK and Iceland 鈥� have launched biobanks which store and analyse DNA donated by citizens. But most of these state initiatives focus on providing anonymous gene data for medical research, and are bound by law not to give any feedback to donors. Doing it this way makes collecting samples for research legally and ethically easier, but means that those who donate DNA receive no information, even if their genomes are found to indicate a high risk of disease.
鈥淲e want to invest in preventing or delaying the onset of common chronic diseases by using genetics to identify people at high risk,鈥� says , Estonia鈥檚 minister of health and labour. He says the country plans to one day have a national biobank and Health Information System that contains the genetic data of every inhabitant of Estonia.
Difficult to interpret
But some have warned that the genetic advice could create unnecessary alarm. 鈥淎n offer of free genetic profiling may seem tempting but the information is often difficult to interpret, particularly in relation to risk of serious conditions,鈥� says , of the UK Nuffield Council on Bioethics. 鈥淭his may well create more questions than answers for those who take part, and in some cases great anxiety,鈥� he says.
A project like this has many potential security and privacy issues. 鈥淭here 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,鈥� says Whitall.
Ossinovski says that although the information collected will be personally sensitive, it will be highly secure, anonymised and coded to prevent third parties from accessing, identifying and exploiting it.
Since the scheme was launched on 20 March, Estonians have raced to sign up for the service online. 鈥淲ithin the first 48 hours, we had 10,000 applicants. Our server was overwhelmed,鈥� says of the Estonian Genome Center, which will host the service. Ossinovski was the first person to sign up, and he will be the first to donate his blood to the project on Monday.
鈥淚nitiatives that enable the public to make choices about their health should be welcomed,鈥� says , an ethicist at the Wellcome Sanger Institute, in Cambridgeshire, UK. 鈥淭he key to success is open, transparent dialogue between the professionals doing the testing and the people who are being tested.鈥�
