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Technological progress in genome sequencing has made it possible to obtain an individual’s genome data, consisting of more than 6 billion letters of A, C, G and T, at a cost of less than €1,000. This is beginning to revolutionise medical practice in diseases caused or influenced by genetic factors.

Megeno strives to leverage this medical progress, and expand genome-informed medicine from early diagnosis and personalised therapy to the prevention of disease. The partnership between Megeno and SnT aims to develop a framework enabling the implementation of trustworthy services that address the numerous socio-technical, governance, and legal challenges that emerge when genomes of healthy individuals and their families are pre-emptively sequenced and preserved for future medical uses.

Consent, privacy, security

SnT’s research will focus on the design of the consent experience in accordance with legal-ethical requirements, an essential component for a user-centred genome data management system. This complex field requires specific reserach. “Since the digitised data may be linked not only to a person but also to the person’s kin, a dynamic and new type of consent is needed. Then, the data flow should be designed to be auditable and to elicit the trust of users,” explains Assisting Professor Gabriele Lenzini, who coordinates this partnership’s research activities at SnT. The researchers will also look into state-of-the-art technologies for privacy and security in the specific domain of genome data management.

We will create a Luxembourg-based service available for institutions and citizens across Europe.

“We are excited to work with experts from SnT on usable, secure and trustworthy systems for genome data services”, says Erich Felber, Megeno’s CEO. “With additional support from EY’s Advisory Group, we will create a Luxembourg-based service available for institutions and citizens across Europe. Our goal is to establish personal genome data as a lifelong resource for the individual, supporting novel approaches for disease prevention.”

Protecting data: the European way

An increasing number of voices are calling for a distinct “European” way of dealing with highly sensitive personal data, which should be different from the approaches used in other regions such as the USA and China. “No data is more personal than our genome data, hence its handling goes well beyond GDPR considerations,” says Michael Hofmann, Partner (Cyber) at EY Luxembourg. “With the appropriate governance and oversight mechanisms, Megeno seeks to be the leader in the ethical handling of this highly sensitive personal data and to position Luxembourg as the safe haven for genome data.”

This partnership is a prime example of SnT’s role in promoting innovative digital services for the advancement of Luxembourg’s society and economy.

“This partnership with Megeno is a prime example of SnT’s role in promoting innovative digital services for the advancement of Luxembourg’s society and economy,” says Björn Ottersten, director of SnT. “Industry innovators such as Megeno with its focus on personal genomics, benefit from the Centre’s partnership programme and from the interdisciplinary expertise of its researchers.”

Photos: © University of Luxembourg

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