Gene donors storming the Genome Center

Photo: Sille Annuk

The Estonian Genome Center opened the submission of consent forms for new gene donors on Tuesday (March 20), but the mass of volunteers brought down the website.

“It is wonderful to see such huge enthusiasm,” Annely Allik, the spokesperson for the Estonian Genome Center, said. “The IT department just checked the most popular periods for registration and I can say that at every moment there are at least some 600-1,000 people trying to push the button “Sign your consent””. After the registration at the website geenidoonor.ee has been open for 24 hours, a total of 4,600 people had registered. The number of new donors had increased to 6,500 by Wednesday evening.

“We already set up a twice as powerful server as they initially recommended. It was further boosted right now, and the website should not cause any more problems”, Allik said Wednesday night.

In fact, there is no need for rush, since the gene maps will be made for 100,000 donors and registration will remain open until the end of the year.

Blood samples will be taken starting from April 2 in major hospitals and SYNLAB blood donation sites. Although there is no requirement to book time in advance, Allik warns that donors should not haste with their blood samples early in April.

“We received a mail complaining that the sender lives in Haapsalu and cannot donate blood. But the consent can be signed, and one can have the procedure done at any suitable moment when visiting Tallinn or Pärnu”. The procedure takes five minutes and is absolutely free – of course, apart from five milliliters of blood drawn from the vein.

Calm down, the is no need to hurry

The government allocated five million euros to the Estonian Genome Center for determining the genotypes of 100,000 people. “This amounts to approximately 50 euros per person, including the drawing of blood, separating the DNA and genotyping. There is no budget for other activities right now, the five million will be all used for determining the genotypes of individual people,” Allik said.

Besides using the donors’ anonymous data in research, all participants will have their personal gene maps drafted, based on which the donors could receive feedback in the future regarding their individual health risks and compatibility of medicines.

Tõnu Esko, senior researcher of the Genome Center, cites the risk of heart diseases, which the gene map would reveal. “If a person’s gene map indicates a more than 95 percent gene variant increasing a disease risk, the individual’s risk of that disease is 20 times higher than that of a regular person”, Esko explained. All that is cheaper for the society and the health care system in the long run, he added.

But based on the gene maps, reports will have to be drafted providing information to the persons concerned about themselves. And advising these tens of thousands of patients will be the business of Estonia’s medical system rather than the Genome Center. It is not yet clear, how and when that information will reach the medical system. It should happen in the next few years, according to the Ministry of Social Affairs plans.

Mapping when necessary

“There is no relaying of such personal risk assessment in the medical system anywhere else in the world. Many countries are moving in that direction, but Estonia is a trailblazer in that respect”, says Andres Metspalu, director of the Genome Center. He added that even if there should be more than 100,000 volunteers by the end of the year, the Genome Center has decided to accept all applications and blood samples. The genotype maps would apparently be made at some later date when the state has allocated extra funding.

“A gene map has to be drafted only once in your life, since while the awareness of generic risks is increasing, our DNS remains the same. While in 2007, for example, the science approximately ten gene variants increasing disease risks, the figure has increased to more than 50,000 by now”, Tõnu Esko said.

Since 2002, Estonia has collected more than 52,000 gene donors. “The initial idea was that is gene maps have been drafted during research, this data could be used for the interests of the individuals rather than purely for research. While a gene map cost some 500 euros ten years ago, today’s cost is approximately 50 euros per person”, Allik said.

Gene maps were completed last year for all existing gene donors, but only six people are currently involved in consulting the donors and their time has been booked in advance for months.

According to the Human Gene Research Act, a gene donor is a person, who has signed a consent form for joining the genome database, has filled in a questionnaire concerning the state of health and genealogy and has submitted a blood sample. Anyone older than 18 years can be a gene donor. The gene and health data are recorded in the Genome Center in code, i.e. in depersonalized form.