With the European Parliament's summer break causing progress on new General Data Protection Regulations to stop, cancer experts have taken the opportunity to criticize the proposal. Opponents of the changes warn they could make it practically impossible for researchers to access patient data for cancer research.
The European Society for Medical Oncology (ESMO) outlined its problems with the current wording in a press release. ESMO is concerned about the need to obtain "explicit and specific patient consent." That line isn't in the proposed data protection regulations, but is the message ESMO has derived from the document, which includes 122 uses of the word "specific" and 15 of explicit. If the law is enforced as ESMO fears, scientists would need to approach patients for every piece of research that used their data or tissue samples.
"This could put a halt to many public health research efforts," ESMO President Rolf Stahel said in a statement. ESMO and experts quoted in its release highlight two situations in which they think the law is particularly problematic. International Brain Tumour Alliance Chair Kathy Oliver questioned what happens after the patient who donated the data or samples dies. And ESMO's Paolo Casali said the need for cancer registries to be all-encompassing makes them fundamentally incompatible with the law.
Casali laid out ESMO's issues with the proposals in a paper published in the Annals of Oncology. Members of the European Parliament now have a month-long summer break to consider the criticisms before reconvening in September. Susan Foster of Mintz, Levin, Cohn, Ferris, Glovsky and Popeo, P.C. expects the regulation to be adopted next year and come into force in 2017.
- read the ESMO release
- here's the Annals of Oncology paper
- and Foster's comments