Denis Horgan: Working towards joint understanding in Europe of the benefits of linking policy and novel care options.
Denis Horgan, Executive Director, European Alliance for Personalised Medicine, shared on LinkedIn:
“Working towards joint understanding in Europe of the benefits of linking policy and novel care options.
Berlin, 11 October 2023: Further progress has been made this Monday and Tuesday towards building a comprehensive EU platform for cancer and public health genomics, as is revealed through the latest conference of Can.Heal, hosted by Charité in Berlin and organised under the umbrella of CAN.HEAL. The sessions demonstrated that much has been achieved by the consortium and that CAN.HEAL is gaining momentum, writes Denis Horgan, Executive Director, European Alliance for Personalised Medicine.
Leading European figures from medical science, innovative technology developers and EU health policy spent two intensive days plotting the next stages in bringing a new coherence to advanced health care.
The exchanges offered clear evidence of the significance of the choices and decisions that have to be made as Europe struggles to identify the best ways forward to take advantage of new opportunities in healthcare.
In discussions of the European Health Data Space, the EU’s current bid to regulate how personal data may best be used for individual health and for research, the insistence by Dorothee Andres of Germany’s Federal Ministry of Health on the importance of ‘opt in’ in arrangements that ensured individuals would by default preserve the confidentiality of their genetic data was met by a chorus of opposition from elsewhere within the consortium, equally insistent that ‘opt out’ was the only mechanism that could support empowering data for the benefit of patients.
The example was given of Austria’s laws successfully providing organ donation as the default option at the time of death, unless individuals explicitly opt out. By contrast, in Germany, organ donations are lower, because of opt-in requirements that leave many people unaware that they have to explicitly opt in, even when they might have been disposed to donate.
The same impact would be felt from imposing opt-in requirements on European Health Data Space, creating obstacles for translational research and limiting the potential benefits to patients.
The event saw a scene-setting by the project coordinator, Marc Van Den Bulcke of Sciensano, who stressed the groundbreaking nature of the Can.Heal project link as it works towards a European agenda to speed up the delivery of diagnostic and public health genomics services to patients and citizens.
For the full press release, please see this link.”
Source: Denis Horgan/LinkedIn
