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LIBE Vote on the Proposed Data Protection Regulation: A Bitter Disappointment for Public Health and Cancer Research

As many ECL members will be aware, the oncology community led by ESMO and the European Network of Cancer Registries had been advocating to ensure that the Data Protection Regulation proposed by the European Commission in January 2012 includes the appropriate measures for public health research.

In order to assure the adequate protection of people in Europe using the search engines, social media and e-commerce for example, the EU’s Commissioner for Justice Vivane Reding proposed an update to the 1995 Directive on Data Protection. However the proposed regulation unintentionally overlooked the use of patient data for public health research. Thus over the course of 2013, the oncology community and public health advocates have been advocating for more flexibility in the proposed legislation in the key following areas:

  • Broad/one-time consent to donate data in the text of Article 81 (health) and Article 83 (processing of data for historical, statistical and scientific research).
  • To prevent total annonymisation of data used for public health so that record linkages could be maintained to ensure the quality of cancer registry data

Up to the 17th October 2013, these changes were accepted in the proposed legislation by the ITRE committee and political groups in the European Parliament. However on the 18th of October: the Friday before the key LIBE committee vote on the 21st October, the rapporteur of the Directive, Jan Albrecht MEP came up with a list of ‘compromise amendments’ which essentially eradicated derogations for public health.

Thanks to analysis done by Rhode Public Policy consultants for ESMO, we know that all the compromises were voted on in a block, meaning there was no opportunity for MEPs to reject specific compromise amendments. They were all (including the ones on Art 81 and 83) adopted unanimously - 52 for and 0 against. The LIBE position on Data Protection was thus adopted unanimously with 49 votes in favour and 3 against. Furthermore, the mandate for negotiation with the Council was also adopted unanimously - 51 for and 1 against. This was considered essential by the LIBE committee in order to ensure that the trilogue negotiations start as soon as possible and to have a united front when it came to negotiations with the Council.


Mr Albrecht has indicated that the next steps would be to go to trilogue as soon as possible and try to get a first reading done before the European Parliament elections in May 2014. Their aim is to have the European Council vote on this Directive the April 2014 plenary.

 

  
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