Genome project unique in the world

  • 2000-07-06
  • By Jaclyn M. Sindrich
TALLINN - The mapping of the human genome is recognized as one of the
most important scientific discoveries of all time. The
three-billion-bit blueprint of the human being took researchers 10
years to complete, and now the world awaits the decoding of the genes
and the promised medical breakthroughs - Estonia included.

"We were aware that the announcement was coming, but nobody knew the
exact moment," said Maris Vali, Estonian Genome Foundation Center
management assistant, of the scientists' achievement. The foundation
declared the accomplishment of the international scientists an
essential component for the future success of its own genome project.

Indeed, Estonia has its own genetic research in the works: the
Estonian Genome Project. Initiated by the Estonian Genome Center
Foundation, an institution founded last year in Tallinn, the project
aims to launch the Estonian Gene Bank, an elaborate database of
health and gene data of the country's population, in order to carry
out studies and discover the genes that cause and influence diseases.

Its goal is to eventually use the database and tissue bank
information to prescribe individualized treatments for one of the
leading causes of death in modern society: cancer.

There is no other gene bank like it in the world, according to the foundation.

The Genome Project has been prepared in cooperation with a variety of
specialists and gives Estonia a possibility to participate in the
development of top-level medicine, according to Andres Metspalu,
professor of biotechnology at the University of Tartu, and one of the
initiators of the Estonian Genome Project.

"The project prepares for more efficient health care provided to all
persons in the future, increases Estonian scientific potential and
favors the country's economic development," said Metspalu in a press
release.

Still, the news of the mapping of the human genome shows that the
science of genes and biotechnology are developing at an incredibly
fast pace.

"The Estonian Genome Project can be a success in the world only if we
act faster and are better than our competitors," explained Metspalu.

Before starting the project, Estonian Genome Center Foundation
presented the Ministry of Social Affairs with a draft act on human
genome research in April. The draft act, to be discussed in
Parliament on July 4, will give the legal space required for carrying
out the genome project.

The legislation regulates the research of the genome and the
establishment and data of the gene bank, assures gene donors their
privacy and protects against the misuses of genetic information in
everyday life.

Scientists hope that Parliament will pass the act by late September
or early October, said Vali.

The target date for the pilot project is October, at which point
phenotyping, otherwise known as health mapping, will begin.
Phenotyping aims to collect the most important data about the
Estonian population, including health status, genealogy, lifestyle
and environmental factors.

The initial group of 500 Estonians will voluntarily give blood
samples in order to isolate their DNA and plasma for genotyping -
also known as genetic mapping. Adults will have 50 milliliters taken;
children between age 7 to 18, 20 milliliters.

The first group will be made up of people who went to see their
doctor and are asked if they want to participate.

"They are made fully aware of the study and are asked to sign a
consent form," Vali said.

In order to treat ethical questions that may emerge during the
project, a six-member ethics committee has been assembled.

Vali stressed that while the gene bank database and results of the
gene tests are strictly confidential, the project is not a secretive
venture. The information connected with the creation and use of the
gene bank is public and available to everybody.

"The Genome Project also includes a strong educational component -
every human being, whether or not he or she participates in the
project, will receive general knowledge of genetics, either through
the contribution of the media or directly from a doctor," Vali
pointed out in an executive summary of the project.

Total expenses for implementing the Genome Project are projected to
be 1.5 billion kroons for five years; two-thirds of that amount will
go toward genotyping. The foundation currently expects the state to
finance up to one-third of the project, acccording to its executive
summary.

Cancer-fighting project

"Nowadays, the treatment of cancer has been insufficient and
unspecific in many ways," reads the foundation's Web page. Patients'
treatments are based on "average" statistical data from clinical
population studies. But the reality is much different.

"A single patient seldom corresponds to the so-called "statistical
average"...This leads to a great need for describing cancer diagnoses
at the molecular genetic level," according to the foundation's Web
site.

The database and tissue bank will serve as the subjects of detailed
research for different cancers. Within 10 years, the project's
scientists should be able to determine the prognosis of certain
cancer patients and individualize their treatment prescriptions.
Creating personalized malignant tumor prescriptions based on the gene
bank research should result in more effective treatment, as well as
reduced treatment costs, according to the foundation's Web page.