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Report

Teaser, summary, work performed and final results

Periodic Reporting for period 1 - Genomcore Identity (Genomcore Identity: databank proxy for DNA fingerprinting from whole exome/genome for biometric identifica-tion)

Teaser

Summary

Access to genetic information is becoming increasingly common, either for commercial purposes such as Helix, 23andMe, Ancestry.com or for biomedical purposes with many relevant initiatives such as Genomics England which includes the DNA sequencing of 100.000 citizens, or the Estonian Genome Project which includes the sequencing of the 100% of the population. Other than the existing potential that DNA has to prevent, diagnose and treat diseases in a personalized way, DNA is the most unique piece of information each person has with the capacity to identify not only an individual but also his or her direct relatives. This is why security forces aim to collaborate at an international level to keep databases with genetic markers updated in order to identify missing persons or even forensic purposes.
Keeping databases with massive amounts of DNA records give the security forces the possibility to use this information in the exercise of their duties, without regard to privacy concerns and usage for different purposes than those originally authorized, especially when health records or personal rights are disclosed. Notwithstanding, this would allow a much more rapid and cheap identification of individuals in cases of traffic accidents, missing children or paternity claims, avoiding unnecessary costs.
In this project, we decided to study the feasibility of creating a platform that allows the transformation of raw genetic data into a minimum data set to be used as a biometric identifier, congruent with the current standards used in the sector and that preserves the userâ€™s privacy by deleting any information related with the personâ€™s health or ancestry. With this platform, citizens can ascertain that their genetic information doesnâ€™t reveal more than their fingerprints; while genomic service providers could respond to extraordinary requests from the security forces on identifying missing persons on a standard basis.

Work performed

At the beginning of the Project we designed a technology proxy that allowed the aggregation and transformation of raw genetic data into a biometric profile that brings up other databases without disclosing userâ€™s sensitive information. We have interviewed with different stakeholders, including security forces, associations of families of disappeared persons and forensic experts.
During the project, we validated the concern of non-governmental forces (especially associations of families of missing persons during wars or migratory movements) to develop this technology, as well as the difficulties that vendors have while working with forensic governmental units (a slow market that generally operates through public tender). On the interviews, we also verified that the guarantee of privacy and security, as well as the re-authorization for future uses of genetic data are sensitive topics without specific solution.
As a matter of fact, without a standardized solution that guarantees the privacy and security of genetic data the implementation of genomic analysis in other areas are hindered. We could also determine that health insurance companies are reluctant to develop personalized medicine programmes based on the DNA of the insured person in fear of the reputational risk that supposes that public opinion believes that such information is being used to adjust premiums or deny services (which is illegal and none of the insurance companies we have talked to intended to do so).
In order to respond to the challenge of how personal genetic information can be used for any given purpose consented by the user and, in compliance within the legal framework, we have adjusted our idea of a proxy to work with personal data to a privacy management proxy, where users could authorize different uses and re-uses via electronic signature, at the same time that the embedded encryption system prevents anyone (including the service provider) from accessing the data without the userâ€™s consent.
Such a system has been introduced to different insurance companies receiving extraordinary feedback; even a Spanish insurer has piloted within the framework of the project. Hence, we consider that our technology has the potential to enable the implementation of new models of use and re-use of personal genomic information with biometric or assistance purposes.
You can find more information about the developed system, called Genom.care, through its website https://genom.care.

Final results

We are increasingly generating more genetic data while precision medicine is considered to be the next revolution in healthcare, which will improve the care quality while decreasing system costs due because of prevention and stratification. This means that over the next decade public or private projects will be developed, being the genome privacy and security management the major challenge.
The proposed solution is based on a technology that prevents genetic data from non-consented accesses, including hackers or even employees from the service provider companies. At the same time, we propose a framework for informed consent and electronic signature linked to the data encryption, allowing a scheme where the whole genome is sequenced once in a lifetime and used throughout it. This opens the way to access genetic data inexpensively.
This model is an enabler to those actors that until now were reluctant to offer genomic services. Now they can do it on a cost effective way without compromising the userâ€™s privacy and security.
We believe that our technology has the potential of becoming a new standard in the access and use of genetic data, similar to what Paypal payment getaway was at the beginning of e-commerce, providing trust and security to the very sensitive process of exchanging genetic data.