Ethical questions raised in search for Sardinian centenarians’ secrets

There is something like gold flowing through the veins of 100-year-old Maria Tegas, and everyone wants a piece of the treasure.

The centenarian, who lives in a poor and remote area of central eastern Sardinia – in one of 14 villages known to geneticists and genealogists as the Blue Zone – has not had an easy life. Orphaned at the age of one, she remembers what it was like to go hungry, when homemade acorn bread was her main sustenance. As a young woman, she often walked 15 miles (24km) a day in steep and rocky terrain to bring food home to her six children.

“We lived like birds in the sky,” she says in a tiny whisper of a voice. Life got better, she says, when she began receiving welfare at the age of 50.

Tegas and hundreds of Sardinians like her have been considered a medical mystery since scientists started competing to find out why Blue Zone inhabitants have a life expectancy that is significantly higher than other Sardinians about 20 years ago.

For every 100,000 people living in Sardinia there are about 24 centenarians, but in the Blue Zone there are three to five times as many.

The ‘longevity gene’

There is no shortage of theories. Every aspect of the centenarians’ lives have been studied: the traditional diet of whole grains, goat milk and pecorino cheese; the fact that most are taken care of by family and not placed in nursing homes; and the vast distances most walked on a daily basis when they were young. But the most intriguing theory of all is one that’s more intrinsic: the possible existence of a ‘longevity gene’ that has helped centenarians like Tegas fend off disease.

A British biotechnology company, AIM-listed Tiziana Life Sciences, announced last month that it was ready to weigh in on the mystery following the purchase of a DNA database that contains blood samples from 13,000 residents of the Blue Zone, including Tegas and other members of her family. It was a remarkably cheap deal: just €258,000 (£217,000) for a database that took years to collect after the company that ostensibly owned the database, Shardna SPA, went broke.

But not everyone is enthusiastic. On the night of 5 August a small group of concerned Sardinians gathered at a meeting spot in the town of Tortoli to discuss the deal. Most of those at the meeting, including two former mayors and members of a citizens’ rights group, criticised the Tiziana acquisition, suggesting it was fundamentally unethical and possibly illegal, while a minority thought the deal could still be beneficial.

“In the beginning, Shardna and DeCode were competitors. Then DeCode built a real company, and had articles in medical journals every month,” said Falchi.

After a while, Falchi said he and others abandoned Shardna because they were unhappy with the management of the company, despite its potential.

Shardna eventually collapsed and was sold to a famous research institute, San Raffaele hospital in Milan. In 2012 San Raffaele itself became embroiled in a financial scandal, which opened the door to the bargain sale of the Sardinian database by a bankruptcy court.

Tiziana founder Cerrone, who said he had followed Shardna’s progress for years and was “obsessed” by the database, swooped in and bought it.

“Here we’ve resurrected this company from a coma,” Cerrone, a native Italian, said. “If this was done in the UK or the US, people would be very positive. Unfortunately what you are seeing is people being envious that they didn’t do it themselves.”

Opponents of the deal have turned to a local businessman and dentist named Piergiorgio Lorrai to lead the fight against Tiziana. Lean and sporting a permanent-looking tan, Lorrai bought Parco Genetico earlier this year for an undisclosed sum and claims PG is still the rightful owner of the database it helped created back in 2000. The very same database Tiziana now apparently owns the rights to.

Lorrai has hired attorneys – including one whose own DNA is included in the disputed database – and is preparing to launch a suit to challenge the deal.

Cerrone dismisses the controversy. “Honestly, this guy [Lorrai] is seriously small potatoes,” he said. “I don’t get caught up in the minutia – that’s why I left Italy – I like making and creating big companies,”

Asked about whether the sale was legal, given the alleged limits of the consent agreement the DNA database was based on, Cerrone said: “If the government and the judge in the bankruptcy court are doing an illegal sale, then I put my arms up in the air. Then there’s really no hope for Italy.

“The sale was a bona fide legal sale and there is no reason to believe otherwise … When an asset is bought through a bankruptcy court in Italy it is perhaps the most scrutinised transactions as it is subject to approval from banks, creditors, government agencies, and finally a judge.”

If Lorrai succeeds in challenging the deal, legal scrutiny will likely focus on documents shown to the Guardian that show the DNA database was subject to a mysterious contract back in 2006, when a now-former representative of PG appears to have signed over the rights to the DNA it collected to Shardna for a sum of €50,000.

The origin and reasoning behind the contract are unknown, but Lorrai said it was the likely product of conflicts of interest between Shadna and PG that were never closely scrutinised. Regardless of that contract, participants in the research never agreed to sell the rights of the DNA, he said.

The question now is whether participants like Maria Tegas or her children will ever gain from the research that has put her corner of Sardinia on the map. When Cerrone was asked whether he believed Sardinians ought to benefit in the future from any potentially lucrative medical advancements that might emerge, the executive demurs. Tiziana has already “given back” to the community when it bought the database for €258,000, including all the outstanding debts.

“We paid all the unpaid salaries from the locals who never got paid. Did I get it all for a good price? I hope so. We’ll know in ten years.”

Blue Zones

Four areas of the world have been designated as Blue Zones by scientists: Okinawa island in Japan, parts of central-eastern Sardinia, the Nicoya peninsula in northwestern Costa Rica, and the Greek island of Ikaria.

Certain traits link most of these areas, where exceptional longevity has been proven. First, most of the populations have been isolated for long periods due to their geography or other reasons, which in some cases led to inbreeding between distant family members, possibly helping certain genetic variants that favour longevity to be passed on from generation to generation.

The Greek island of Ikaria is also designated as a Blue Zone by scientists studying longevity. Photograph: Eirini Vourloumis

The insularity of these communities could explain some delays in socio-economic development, researchers have found, making them relatively poorer than other nearby communities and delaying the onset of capitalism. Other similar characteristics include high quality food (though not necessarily abundant), physically-active lifestyles, and a prevailing attitude of collectivist rather than individualistic thinking. The latter, in turn, has limited the onset of high stress levels in the communities, researchers said. Finally, the four communities all exhibit strong social cohesion, a fact that potentially allows older people to still feel like they are an important part of society.

Gianni Pes, the Sardinian scientist who helped coin the term Blue Zone, is not convinced there is any such thing as a “longevity gene” that sets the populations apart. For one, there are genetic differences between the populations of the 14 towns that comprise the Sardinian Blue Zone, suggesting other factors – like environment and diet – may play a bigger role than just genetics.

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