Personalised medicine and the European data misery

Forging an independent path

So how can Europe with its fragmented health care systems and strict data protection laws compete with the US market-driven health data model and China’s state-controlled one? Unless we keep pace in the international arena, our hospitals will have to rely exclusively on artificial intelligence solutions from American and Chinese companies, just like Roche. Moreover, pharmaceutical companies may relocate their headquarters and research centres to countries richer in accessible health data.

One way out of such dependence lies in Europe’s faith in the autonomy of its citizens and in the new General Data Protection Regulation, which accords citizens the right to a copy of all their personal data, whether medical or non-medical.  Only they can gather data from their smartphones, patient records, purchasing data and genome data; only they decide who can access the aggregated data. Precisely this puts European citizens into a very powerful position; and to realise this potential a new framework of trust is required.  

Empowering the citizens

Switzerland is well positioned to take a leading role in establishing such a framework: world experts in data security and cloud computing are working at ETH and other Swiss universities; strong data protection regulations and a stable democratic government help to build trust. The non-profit MIDATA cooperative, jointly initiated by researchers at ETH Zurich and Berne University of Applied Sciences, operates a platform where people can securely store copies of all their personal data, including that from mobile sensors in smartphones5. And they decide whom to share this data with.

Such platforms mean that researchers and companies like Roche and GlaxoSmithKline can access not only limited subsets of data, but also comprehensive aggregated sets, which are so valuable for personalising preventive measures and treatment.  Moreover, any financial gain here does not go to Flatiron or 23andme shareholders – at MIDATA, for example, revenue is reinvested in services and research projects that benefit society at large.

If we create the conditions where European citizens will exercise their right to a copy of their data, use their data for personally selected services and make it available to research, then we have the opportunity to transform our current data misery into a democratically controlled data ecosystem – for the good of personalised medicine and society as a whole.

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Author: Shirley