GDPR as of today: ESMO reinforces harmonious uptake of health research provisions
ESMO welcomes the coming into effect of the EU General Data Protection Regulation in its final form, which is able to protect the privacy of patients without jeopardising clinical, translational and epidemiological research.
In particular, ESMO has relentlessly supported and advocated for:
- The inclusion of a withdrawable ‘one-time consent’ from patients allowing their data and tissues to be used, subject to strict ethical standards, for future retrospective clinical research, which will also ensure the viability of biobanking (recital 33)
- The inclusion of a ‘no-consent’ principle to allow research on population-based disease registries in line with strict ethical standards (recital 157)
With the Working Party 29 Guidelines on Consent, a harmonious interpretation of the conditions for scientific research across EU Member States is now facilitated.
ESMO is stressing the need for harmonisation and is committed to helping EU institutions and individual Member States to protect the future of health research by understanding the importance of these two crucial provisions and ensuring their uptake in practice.