As weird as it may sound, missing blood samples from a laboratory is a serious theft. The recent story of an alleged theft of DNA samples from Italian gene bank is marked with weirdness though it eventually turned out to be a mere confusion.
Earlier this week, Italian prosecutors initiated an investigation into the suspected theft of thousands of DNA samples collected from the population of Sardinia Island in Italy. Over 14,000 test tube samples were said to have disappeared from the Parco Genos laboratory in Perdasdefogu, which were collected as a part of a longitudinal study of longevity.
Although the alleged theft took place in August, it was not before this week that the press reports were publically released and this theft made its way to the headlines. In this twisted tale involving multiple stakeholders, the missing blood sample vials were found to have been legally moved to a separate laboratory more than three years ago by a researcher, which seemed like an abrupt end to it all.
But if these samples were moved to another facility, why did it take them three long years to find out of this? While it sounds bizarre, these missing vials were not even missing in the first place and all this mayhem was just a waste of time.
The incidence was a perfect sci-fi suspense story plot, when DNA samples collected since year 2000 as a part of Italy’s National Research Council (CNR) project went missing. This too happened when the project focused to delve into the genetic dynamics of the inhabitants of Sardinia who have remarkably longer life spans than others. While the geneticists have been trying to unravel the secrets to aging and the role played by genetic makeup for years, this investigation into Sardinian population has the world’s eyes glued to this developing story.
Talking of the people of this island, they are exceptionally long-lived and on an average 21 out of every 10,000 residents of this area live to the age of 100. On the contrary, in American population, only four out of 10,000 cross past a century of existence. The astonishing longevity of these people isn’t a hidden secret; in fact it was globally recognized in 2012 when Melis siblings of this island emerged as the longest living nine siblings with a combined age of over 818 years and set a new world record which was verified by the Guinness World Records.
While the population of this region is genetically isolated (genetically homogeneous) due to inbreeding, what fascinates researchers the most is the secrets that lie in their genetic code. Often one’s heath is an outcome of their genetics, lifestyle and environment, but when the genetic pool is not too diverse, the prime focus becomes the genetic component and that’s exactly the case with the people of Sardinia who are driving the scientific world insane.
But How Was It Just A Mere Confusion And Where Did It All Begin?
In August, a lab technician at Parco Genos contacted a public prosecutor when her mobile phone detected a temperature anomaly in one of the facility’s refrigerators when the place was supposed to be vacant. Upon checking the drawers, she learned that three of them were empty and an investigation was initiated without any delay. Initial investigation found no evidence of breaking into the facility and it was suspended that an inside man is involved in carrying out the crime.
The incident left the researchers and investigators perplexed as stealing blood vials without the corresponding health and genealogical data would be of no use.
However, on 14th September, Mario Pirastu, a researcher at the CNR’s Institute of Genetic and Biomedical Research, got in touch with the investigators and told them the vials had been shifted to the San Giovanni di Dio Hospital in Cagliari, three years back. He added that the samples are often moved from one facility to another for research purposes and it is a routine practice. As he presented his stance to the investigators, he expressed his surprise over the lab technician’s speculation of theft.
While the mystery of these missing vials seems to be solved by the clarification provided by Mario Pirastu, it is still a question as to what missing vials the lab technician was talking about. The investigation is still underway and it is said that the refrigerators in all the involved research facilities will remain sealed off for a few more days.
Joint Ventures and Data Ownership Complexities
While the data of this extensive research has been stored in CNR’s Institute of Genetic and Biomedical Research in Sassari and in another laboratory owned by Shardna Life Science Research Company, the study has many ownership complexities involved and with this theft allegation the matters have gotten worse.
As this story developed in Italy, the details of the firms involved in this research sparked anger from the locals who had taken part in the research solely for public interest. This recent uproar is the result of involving foreign firms in the research for monetary profits.
While Parco Genos started working as a non-profit firm owned by local government bodies, it is now a privately owned firm. However, what triggered anger amongst the people was the change of Shardna Life Science’s ownership. It was in July this year when UK-based biotechnology company “Tiziana Life Sciences” purchased the key assets of Shardna for €258,000, which means the research on the longevity genes of the Sardinian population will directly be owned by Tiziana Life Sciences. In relation to this, a member of Tiziana’s Scientific Advisory Board said: “The acquisition of Shardna represents an opportunity to study a unique collection of DNA samples from a homogeneous and well-characterized population. This could advance our understanding of aging and other key pathophysiological processes and potentially result in diagnostic and therapeutic advances.”
With this change in the ownership, this British company claims the ownership to the genetic data collected from the people of Sardinia which arises many bioethical questions.
Does This Incidence Lead To Violation Of Bioethical Laws?
It is believed that the samples belong to the study participants and sharing their genomic data, or rather selling it off to a foreign company without their prior content, is unlawful. The rights which once belonged to Shardna are now moved to Tiziana Life Sciences which is unsettling for the public.
With this development in the story and opposition from the Italian people, it is feared that the research efforts which could have led to significant findings for improving health of millions of people will be slowed down.
On the legal front, the Italian law is currently not well-versed in solving such matters.
However, the Italian Data Protection Authority is investigating into the situation. The National Bioethics Committee recommendations released in 2006 about “Biobank and Research on Human Biological Material” has given a prominent weightage to the participants’ consent on sharing of the research data and keeping them informed about the research motives.
In this regard, the National Institute of Health in the US has made clear guidelines to ensure confidentiality and privacy of genomic data. And in the list of many rules, the participants’ autonomy and informed consent are of crucial value.
Indeed when the genomic data has become a powerful medium to get an insight into human health and disease risks, it has become a need to have universally approved bioethical rules and laws that can protect the participant’s data privacy.
This will not only ensure that the data is not exploited by researchers or unauthorized personnel but also encourage the public to actively participate in research projects, which in turn can help humanity at large.