The ambitious Faroese FarGen project has set out to sequence the Faroese genome.
The
project will be the first one in the world to map the genetic material
of an entire population and will thereby bring the Faroes into the
future of personalised genomics-based health systems.
“This is a
joint community project and we will not only be creating a genetic
biobank, but a completely new health system,” Bogi Eliasen said at the
International Conference Copenhagenomics, which was recently held in
Copenhagen.
Eliasen, the programme director of FarGen, points out
that the project will resolve the Faroese's own unique genetic problems,
future proof the health system in a small country with limited
resources and lead the way globally.
Danish scientists are thrilled
"This is a very exciting project
which can easily end up as a role model for the rest of the world," says
Professor Torben Ørntoft, of the Molecular Diagnostic Laboratory at
Skejby University Hospital in Aarhus.
“The vision is right and we
will also be doing that here in Denmark,” he says. “Five years from now I
think we’ll be mapping the genetic material of all patients entering
the country’s hospitals.”
Professor Donald Børglum of the Institute of Biomedicine at the University of Aarhus agrees:
”This
is something that many scientists across the world are working with,
and for the Faroe Islands it is relatively straightforward,” he says.
“The
great advantage with the Faroes is that it’s possible to find
correlations between inheritance and disease – and the underlying
disease mechanisms, which in the long term could provide better and more
targeted treatment.”
Børglum adds that Denmark has a similar
project, called Genome Denmark, in which he and his colleagues will map
the Danish genetic material – initially 150 people by 2015.
New technology makes genome mapping cheaper
Genome sequencing is
today’s big buzz word in scientific circles, and since the first
sequencing of the human genome some ten years ago, the technology has
seen a rapid development in which costs have dropped dramatically and
the speed has exploded. The result is that it’s now possible to sequence
a person’s genetic material for less than €3,000.
This makes it realistic to run such a comprehensive project on the Faroese population, which only counts around 50,000 people.
FarGen is similar to the Decode Genomics project that was launched in Iceland in the late 1990s.
But
Decode is a commercial project, which has ‘only’ sequenced a
representative sample of Icelanders, and which has so far not led to the
development of any new drugs.
FarGen, on the other hand, is a
publicly funded project which aims to sequence the genetic material of
all citizens now and in the future, and is expected to play a key role
in the efforts to improve public health.
In the Faroes, the Decode project sparked a heated debate as the Faroese were intended to be used as a control population.
Nothing
came out of it, but the debate sowed some thoughts. One of the results
was a new genetic regulatory framework, introduced in 2005 to protect
the individual.
The interesting Faroese population
What’s particularly attractive about the Faroese population in this respect is that it is highly homogenous.
Most people know their ancestry back to the 1650s – some can even
trace their family roots all the way back to the Vikings, who arrived on
the islands some 1,000 years ago.
The islands have a public family tree, which is digitalised 200 years back in time. All this makes it relatively easy to determine the genetic factors behind diseases.
But according to Eliasen, it’s the general framework that’s most important.
“It’s
exciting with the isolated population, but the entire setup is
interesting, since it makes it possible to study a host of different
factors.”
He says that the Faroes are a small, compact and
homogenous society without class or racial problems, that the country
has a comprehensive digital health system, lots of health data and not
least the genetic regulatory framework from 2005.
In short, this means that the Faroe Islands are uniquely positioned to be a model for the rest of the world.
Inspired by a Nobel Prize winner
“The technology is ready, but
it needs to be tried and tested in a place where it can be controlled.
And for that purpose, the Faroes are the only suitable place in the
world,” he says.
This has been spotted by international
scientists, and FarGen can now boast a scientific committee which is
close to the top ten in genome research, where Nobel Prize winner James
Watson, who at one time headed the international Human Genome Project,
has been a major source of inspiration, according to Eliasen.
The funding, which is estimated at around €270,000-400,000, has not yet been finalised.
The
programme director says that they are now ready to start sequencing the
first 100 locals, after which they will sequence 5,000 genomes – a
process expected to be completed by the end of 2013. This experience
will be used to routinely sequence the remainder of the population,
including newborns.
Distinctive Faroese diseases to be studied
The genome database
will be used by doctors, who can look up the patient’s genetic material
and for example check whether a certain drug will have side effects, or
whether it’s right to provide preventive treatment for a hereditary
disease.
But the benefits will probably be clear even before that
time. The past few decades have shown that the Faroese have a high
incidence of some otherwise rare hereditary diseases, and even the first
100 genomes will probably prove valuable in the efforts to unravel
diseases that are more or less endemic in the population on the tiny
island community.
“For a small country like the Faroe Islands there are some diseases that no-one else will study,” says Eliasen.
Success depends on the population
In the end, FarGen’s success depends on the goodwill of the population – on how many of them are willing to participate.
Eliasen
is cautiously optimistic and says that genetics is already an important
part of Faroese culture. For instance, the heart disease CTD (carnitine
transport defect) has created awareness among the locals of the need
for knowledge of the genomes.
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