The article features
interesting elements related to the use of patients’ data as well as broad
consent.
On the topic of
patients’ data,
- Researchers
and businesses are concerned about the debate over patient consent to reuse of
data in medical research and the so-called ‘right to be forgotten’. Quoting
Vice-President of the European Commission Viviane Reding, the author further
claims the lack of trust from consumers could hinder innovative research and
burden businesses.
On the topic of
research,
- The Civil
Liberties, Justice and Home Affairs Committee asserted that sensitive data for
scientific research purposes is not as urgent or compelling as public health or
social protection, even though the Commission had proposed an exemption in that
field.
- On the other
side, Sean Kelly MEP (EPP, Ireland), Rapporteur for the Industry, Research and
Energy Committee’s opinion, supports a more research-friendly definition by
introducing a broad consent option.
The concept of broad
consent is among the ones that have been specifically endorsed by VPH in the VPH position paper on the Data Protection Regulation.
On the so-called
‘right to be forgotten’,
- Many consider
it impossible to implement, such as Jan Philipp Albrecht MEP (Green/EFA, The
Netherlands) and Nigel Shadbolt, Chairman and Co-Founder of the UK’s Open Data
Institute.
- The
Parliament’s Legal Affairs Committee as well as the Healthcare Coalition for
Data Protection (which represent various interest groups) claim the right to be
forgotten should not apply to healthcare, in order to ensure the best care and
treatment possible.
Other obstacles could
hinder reaching to a consensus in the future, such as the cost of compliance to
the new Regulation, and the fact that eight Member States including the UK,
Belgium and Denmark suggest the rules would be better suited as a directive
rather than a regulation.
All of this comes in
the backdrop of the recent US ‘PRISM’ scandal, which is likely to embolden
those in favor of stricter data protection rules. The latest revelations on
the NSA programme could very well impact on the evolution of the dossier.
