Knowing their own genetic profile can help predict trends and their consequences for people themselves. Estonia is one of the leading small countries currently working on genomics. (Earlier in the Symposium, the Australian Genomics network had also been mentioned as a good practice
Lili Milani of the Estonian Genome Centre outlined that, in Estonia, the top 5% of people with the overall highest genetic risk scores is equated to 20% of all cardiovascular-related deaths. Hence, heart and cancer specialists acknowledge the value of taking a genetics-first approach to preventive medicine.
An important percentage of the Estonian population was willing to offer a blood sample alongside other (genetic) data, and information, in order to receive a risk assessment of their future health. Several implications arose, however in terms of process. They are the need to have a solid communications effort; consideration of a reliable citizen/patient portal in order to handle the relevant procedures; and preparation for how to treat all the patients who may, as a result, potentially be at risk of future disease.
Today, 23 European countries, including Norway and the United Kingdom, have committed to achieving cross-border access to 1+ million genome sequenced data sets by the end of 2022. Ivo Gut of the Centro Nacional Análisis Genomico (Spain) outlined the ambitions of this Europe-wide initiative, and how it is moving ahead – not only until the end of 2022, but also afterwards.
✅ ePoll: Through an EHTEL ePoll, 12/14 people voted enthusiastically to show that they would in their own country welcome an initiative similar to that taking place in Estonia.
🗣️ Discussions: These genomics-related initiatives were emphasised as playing a vital role in the upcoming European Health Data Space. To build a federated infrastructure like the proposed space, it needs all the players involved to contribute to the different parts of an overall (data space) system in which everyone can collaborate together. Such efforts can help to change health systems and services. It was said that the many positive outcomes resulting from these data space-related efforts can include avoidance of, and reductions in, surgical interventions; improvements in clinical capacity; and lifestyle changes in positive directions for people themselves and for society as a whole. The whole initiative might also result in constructive public and commercial developments throughout Europe.