The Matchmaker Exchange (MME) can be seen as a part of the first steps towards the GA4GH vision of an "Internet of genomics" and has recently been implemented at Oslo University Hospital.
Several more standards are ready and in development for seamlessly using federated computational resources
and shared data. These standards will enable clinicians and researchers to leverage
the world's genomic data in a much more automatic and advanced manner than we
can imagine today. Future genomics is greatly about successfully
enabling data sharing and the use of advanced pattern matching to its broadest
potential. Henceforth it is also vital to ensure that the legal frameworks are flexible
enough to mirror patients' interest, those whose only hope often relies on an effective
cooperation between labs around the world.
recently been implemented at Oslo University Hospital to enable matchmaking of
genotypic and phenotypic information for consented rare diseases cases, in the
first instance with SciLifeLab at Karolinska University Hospital. A condition
of this service going live is approval by the hospital’s Information Security
Officer, using a risk assessment approach. Consequently, and as a part of
Norway’s BigMed precision medicine project, a risk assessment was performed on
this MME implementation, applying the principles of ISO 31000 and 27005 for
risk identification, analysis and evaluation. Risks identified were also
assessed using the local health institution’s 1) risk rating scale for
information security and 2) safety principles and requirements for IT
infrastructure and applications.
findings of the risk assessment were presented as a poster (available HERE) at the 8th
Plenary meeting of the GA4GH on the 29th of November. These were generalized
to capture broader implications for other institutions looking to assure local
implementations of MME, and to draw conclusions on the applicability of risk
assessments for implementation of services based on federated systems for data
access. Please, contact Sharmini
Alagaratnam in case of any questions or further discussion about the risk assessment.
This article is relevant for clinical work within Rare diseases and that of data sharing @BigMed.