Italians plan 'genetic park'

Villagers of Cilento share a common genetic heritage

By BBC science correspondent David Concar

Land of hilltop villages and chestnut forests, Cilento in southern Italy has always been a backwater. Unvisited and unloved, it has been ignored by just about everyone for centuries - until now.

What has changed is that scientists are suddenly queuing up to come here to study the inhabitants and their genetic make-up.

The genetic studies will be co-ordinated in Naples

So much so that the Italian Government has turned nine of the remote villages into a "genetic park" - a place where researchers can come to take blood samples and study medical records as part of an ambitious plan to trace the genetic roots of disease.

The scientists say the people are a rare example of a racially pure population living in a melting pot world.

"These people have been isolated here for centuries, frozen outside the wider population," says Dr Graziella Persico of the Institute for Genetics and Biophysics in Naples, which runs the project.

"They can help us to identify genes for all the common diseases, like hypertension, kidney stones and diabetes - diseases which are very complicated because they involve many genes."

Greek ancestors

Today, Cilento is just a two-hour drive from Naples. But before the roads were built, it was virtually cut off by the mountains and forests for centuries.

There has never been a major wave of immigration and the people are all descended from the same small band of ancient Greek settlers. Some of the villagers still speak Greek today.

And it is this narrow and well-defined ancestry that excites the scientists.

If there must be an exploitation, part of the profits will return to the population

Dr John Guardiola

Comparing the DNA of such genetically similar people should in theory make it much easier to spot the rogue genes that underlie common diseases.

"Here, if you take 20 people, they are all related, so they share a lot of DNA," says Dr Persico. "In London or Naples, you'd have to study 2,000 people to get the same quality of information."

And as an added bonus, many of the village churches have records of births, deaths and marriages going back nearly five centuries. The local priests rely on them to make sure couples who want to get married are not too closely related - always a risk in such a close-knit community.

But if the geneticists get their way, they will be combing the records to establish family trees and trace medically important genes.

Public discussions

First, though, the people must be won round. A similar project in Iceland, set up by a private company, faced a barrage of protest from people who saw it as a threat to their medical privacy.

In the light of that experience, leaders of the Italian project are taking no chances. They have spent months reassuring the people and meeting the mayors and village doctors to explain their plans.

Participants will be given free health checks

No blood samples will be taken until next year, but so far the reaction has been positive. Many people see the genetic studies as a way of raising the profile of the region and reversing years of decline.

Andrea Salati, the mayor of Gioi, one Cilento village which has already agreed to participate in the study, hopes it will create jobs and tourism.

"Obviously, with this project we have to proceed by making sure that people understand not just how important the research is, but also how it could give social and economic benefits in the future by improving people's quality of life."

Ethical dilemma

Anyone enrolled in the study will get free health check-ups. They will also be offered specific information about their own genetic make-up and what steps they might take to prevent disease as and when the genetic studies progress, says Dr John Guardiola who heads the Institute for Genetics and Biophysics in Naples.

Village life has changed little over the years

"They'll get complete information about the state of their health, so that they will have complete information about prevention, especially because most of the diseases we are interested in are manifested late in life and in those small villages they are hardly in the position to receive this kind of information by a different means."

The big unanswered question is who will profit from any drugs or medical tests that are developed from the people and their genes.

So far, the project has been run entirely by the Italian Government. But the Naples team is not ruling out doing a deal with a private company - provided they agree to plough a share of the profits back into Cilento.

"If there must be an exploitation, part of the profits will return to the population," says Dr Guardiola.

"But not to any specific individuals, because that would be equivalent to a pay-off for selling your genetic information."