A blog from the Centre for Research Ethics & Bioethics (CRB)

The need of a bird’s-eye view

Pär SegerdahlIn the previous blog post I wrote about the tendency in today’s research to build common research platforms where data are stored and made open: available for future research, meta-analysis and critical scrutiny of published research.

The tendency is supported at EU level, by bodies responsible for research. Simultaneously, it is obstructed at EU level, by other bodies working with data protection.

The same hopeless conflict can be seen in Sweden, where the Swedish Data Inspection Board time and again stops such efforts or criticizes suggestions for how to regulate them. This month the Data Inspection Board criticized a proposed law on research databases.

It may seem as if the board just dryly listed a number of points where the proposal is inconsistent with other laws or allowed unreasonable infringement of privacy. At the same time, the Data Inspection Board seems alien to the new way of organizing research. Why on earth should researchers want to save so much data so damn long?

How can we handle these conflicts between public bodies that each has his own little mission and thus its own limited field of vision?

Pär Segerdahl

We want to be just - the Ethics Blog


  1. Amal Matar

    i think protecting privacy is important especially now, when one\s privacy is threatened for any given reasons, whether for national security or advancement of research or simply to download an application on your phone.

    • Pär Segerdahl

      I completely agree! Yet, one must not lose sight of the broader picture, otherwise one easily exaggerates “integrity” as an impregnable fortress. There are legitimate reasons to know things about each other. We therefore need to ask why researchers started to create common data platforms as infrastructures for research: why they see it as being important. The Data Inspection Board doesn’t seem interested to learn more about the broader picture.

      • Amal Matar

        i see the broader picture as a lucrative business for pharma companies and even national healthcare units… when one hears of how NHS in the UK is selling data to companies, how can we trust that the real goal is advancement of science and not money making business?

        • Pär Segerdahl

          Yes, that is the system within which we operate, but if you interpret that system as the “real” goal of every goal, then I believe you make it impossible to speak of any particular goals at all except that “real” one. “Our goal is to…” – No, your goal is the money making business. No goal would be acceptable as a goal, because there is always another “real” one. So it seems possible to answer your question without even looking at the broader picture… because we already know what that is.

  2. Edward Dove

    Excellent post, Pär!

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