From Your DNA, Your Say

Public responses to genomics – global views

Anna was invited to present as part of the Genomic Track panel, "Perspectives on Genomics" on Day One of the 2nd European Alliance for Personalised Medicine Congress, held in Milan

Public responses to genomics – global views

26th November 2018

Excerpt from Congress programme:

Forward as one: Integrating Innovation into Europe’s Healthcare Systems.

EAPM’s second annual Congress has, like the first edition and several Presidency conferences, pulled together leading experts in the fast-moving healthcare arena. This year we are also delighted to be working in partnership with the Lombardy Region. As well as being world-renowned for its hospitality, the region’s capital Milan is a world-class driver of scientific innovation (especially in the area of cancer).

Lombardy as a whole represents 16,4% of Italy’s population, produces 21% of national GDP, is host to 814,000 companies (99% of which are SMEs) and is responsible for exports of 108 billion euro. It is also home to 13 public and private universities, 18 Institutes for treatment and research, 12 national research council institutes plus 29 public hospitals and assistance centres. Innovation is all around us, and there are certainly plenty of innovators at this Congress.

Hundreds of Life Sciences thought leaders are here for the coming days as we bring together key audiences who contribute to the vast programme content and vital knowledge exchange.

Large numbers of industry professionals, government regulators, patients, researchers, academia, healthcare professionals, journalists and exhibitors are here to drive insights into action and, more than ever this year, a focus will be on the upcoming European Parliament elections and the installation of a new College of Commissioners. These institutions will be tasked with devising and implementing regulatory frameworks in all areas, including health of course.

As we all know, personalised medicine is in the news more-and-more often these days, with its goal of giving the right treatment to the right patient at the right time. Breakthroughs in genetics, calls for more and better screening, developments in imaging techniques and the emergence of what we now call Big Data have already changed the world of healthcare for ever.

One of the key goals of Congress is to engage politicians and lawmakers in this fast-growing field, and deliver political asks through our consensus- based process. Europe needs to grasp the fact that health equals wealth and that investment in research and innovation, alongside laws and rules that are fit-for-purpose and reflect the swiftly changing world of medicine, are vital.

There needs to be encouragement and incentives for those looking to invest and innovate in Europe. We have the skills and facilities within the bloc but currently lack an ideal environment that will ensure better access to treatment for patients. Innovation and the incentives for it are vital to health and wealth in the current EU-28 (and will be even more important after the UK leaves next year). It also encourages investment from outside of the EU, clearly good for business and jobs.

Topics covered at this event will include a two-day track on the MEGA initiative that is gaining considerable traction. MEGA stands for Million European Genomes Alliance and the joint declaration by a coalition of willing Member States in April was the result of continued engagement over several months. More countries have now signed up to the initiative, as has the Commission.

The declaration indicated political support for linking existing and future genomic databanks, on a voluntary basis, in order to reach a cohort of one million sequenced genomes accessible in the EU by 2022.

Also up for discussion at the Congress will be a multitude of disease areas, the ongoing and hugely important debate on HTA, men’s health and a plethora of other relevant topics – all under the umbrella of facilitating innovation.

We are confident that the Congress will allow you all to air yours views prior to delivering key aspects to decision makers at European, national and regional levels. This will effectively allow for a bridge to representatives in various policy areas. We intend to make sure that your voices are heard exactly where they should be.

Going forward, much has already been achieved through stakeholder interaction, and EAPM’s previous events have seen involvement from policymakers and regulators, MEPs, national healthcare officials, patient groups, HTA bodies, academics, researchers, healthcare professionals, industry representatives and more.

Still, the Alliance believes that the time has come to find on-the-ground ways to turn the dream of personalised medicine into reality. This essentially means the practical integration of innovation-based personalised medicine into Member State healthcare systems as quickly and efficiently as possible.

(To view Anna’s PowerPoint presentation in its entirety, the video file is recommended as the presentation included numerous embedded video files which are not viewable in the PDF file)



Middleton A (2018). 'Public responses to genomics - global views'. 2nd EAPM Congress. Milan, Italy. 26th November. Spoken presentation.