Megeno S.A. and the University of Luxembourg’s Interdisciplinary Centre for Security, Reliability and Trust (SnT) signed a partnership agreement on the development of user-centred, transparent and secure genome data services.
Megeno has also engaged EY Luxembourg who, in the context of its EYnovation programme, will provide strategic advice on the positioning of Megeno’s digital product offering within the EU’s healthcare sector and on the development of a robust governance and oversight mechanism for its services.
An opportunity with a significant impact on European healthcare systems
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 euros. 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.
“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”
User-centred consent experience and data protection
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.
“Equally important as user consent are other instruments in support of compliance with data protection laws. For instance, measures to ensure that people and stakeholders are informed in a meaningful and transparent way about how data will be processed and about how they can exercise their rights,” explains Arianna Rossi, research associate at SnT.
“Such requirements call for specific research”, continues Assist. Prof Gabriele Lenzini, who coordinates this partnership’s research activities at SnT. “First, 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. Finally, researchers at the SnT’s Socio-technical Cybersecurity Interdisciplinary Research group (IRiSC) will look into the state-of-the-art technologies for privacy and security in the specific domain of genome data management.”
Leveraging the strategic position of Luxembourg and its digital infrastructure
The partnership is aligned with Luxembourg’s “Data-Driven Innovation Strategy for the Development of a Trusted and Sustainable Economy”. It seeks to establish Luxembourg as a European centre of excellence in the development and provision of genome services for secure storage, analysis, and Europe-wide transfer of genome data.
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 & 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 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 program and from the interdisciplinary expertise of its researchers”.
“In the light of the overall trends we see in HealthTech, Megeno will be playing a crucial role in disrupting this space by providing innovative services within the evolving genomics market”, says Ajay Bali, Associate Partner (Digital Advisory Services) of EY Luxembourg. “With genome-informed disease prevention services, Megeno is transforming the way we will look at our health in the future”.