Home > All, Politics, Security Issues > Lobbying against data protection reform will now concentrate on national governments

Lobbying against data protection reform will now concentrate on national governments

Well, the European Parliament voted overwhelmingly in favour of reforming the Data Protection Directive with a new Regulation that ensures standard data protection rules across the entire EU, strengthens people’s privacy, increases sanctions against transgressors, and provides some rights to have personal data removed from databases. It is not yet, however, a done deal since the Council of Ministers (that is the EU’s national governments) must also agree.

Industry lobbying against national governments will now intensify. Here’s an article from PharmaTimes published two days ago:

The multi-stakeholder Healthcare Coalition on Data Protection has stepped up pressure on lawmakers in the EU to preserve, re-instate or clarify research-friendly provisions in the European Commission’s proposal for a General Data Protection Regulation.

Why?

According to the Royal College of Physicians, the net impact of the LIBE amendments has been to introduce much more stringent requirements for explicit consent to use personal data for health or scientific research than under current legislation.

Furthermore, the EU totally irresponsibly demands that personal data used for research purposes (which they want to take without asking us) be “anonymised or, if that is not possible for the research purposes, pseudonymised under the highest technical standards, and all necessary measures shall be taken to prevent re-identification of the data subjects.”

This, according to the Healthcare Coalition on Data Protection “would make much valuable research involving personal data at worst impossible and at best unworkable.”

So why do they need to know who we are? To improve our health (not to mention the pharmaceutical industry’s profits, and indeed, it doesn’t mention them) through data-driven approaches.

These include large disease databases, personalised medicine, medical imaging, eHealth, mHealth, human genome decoding, disease prediction, biobanks, biomarkers and many more.

I’m not sure why they need to know who I am for any of that other than ‘personalised medicine’; and frankly I’d rather get my personalised medicine from my GP than through an advertising campaign delivered to my door by the pharmaceutical industry… who knows who I am, where I live, how old I am, what’s wrong with me, my sexual preferences and any past (or present) STDs, whether I’m pregnant or have had an abortion, and probably (through alignment with other databases) how much I can spend on medicine. All of which they want to know without asking my consent.

Categories: All, Politics, Security Issues
  1. Sinead
    June 4, 2014 at 9:31 am

    Dear Sir, I assure you that you are misinformed and unenlightened when it comes to the need for medical research. Without the fine academic studies conducted in the past without explicit consent, very few of the treatments/medicines of today would be available. All new discoveries begin with hypothesis generating evaluation of medical data. So this “personalised medicine” you seek from your GP (? this sentence does not even make sense if you knew what personalised medicine was…) will no longer be available from any source if Data Reform doesn’t recognise medical research as a primary source of Healthcare data processing. Perhaps if you need clarification on this matter, you should ask your GP?

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