Upon request by COREON and some European epidemiological researchers Evert-Ben van Veen analysed the report of the committee on civil liberties, justice and home affairs (LIBE) of the European Parliament regarding the coming European data Protection Regulation. The conclusions of the detailed analysis are that LIBE would have disastrous effects on observational research in Europe, even more so than worried researchers had predicted already.
The report can be downloaded here.

On 29th January 2013, gave a short presentation at the seminar on the new medical devices regulation. The seminar was organised by TILEC and Lexxion, and Evert-Ben van Veen’s subject was about the relation between PMS and Data Protection. The presentation can be downloaded here.
All the speakers at the seminar were highly critical of the draft General Data Protection Regulation.

Het Rapport ‘Big Data in de Zorg: geheimhouding en privacy’ heeft op een aantal sites nogal de aandacht getrokken. Nuanceringen zijn echter noodzakelijk. Het is bepaald niet zo dat nu mag wat we veelal niet voor mogelijk hielden. Caveats en nuanceringen zijn opgenomen in de onderhavige notitie. Met de slotopmerkingen wordt beoogd in positieve zin bij te dragen aan de verdere discussie over verder gebruik van patiëntgegevens ten behoeve van een houdbaar en solidair systeem van gezondheidszorg.

Tijdens Het Instrument 2012 in de RAI in Amsterdam heeft Evert-Ben van Veen een presentatie gehouden over de Code Goed Gebruik. Wie in vogelvlucht over de achtergrond en inhoud van de Code wil lezen kan de presentatie hier als PDF downloaden.

In the latest issue of HUB, the official newsletter of BBMRI-NL, Evert-Ben van Veen has contributed an article on ELSI, the Control of Human Tissue Act and field norms. This is set against the background of the 2011 Code of Conduct for the responsible use of human tissue in medical research. It can be viewed here.

The FEDERA commissioned a Report on the possible use of TTP for health research in the Netherlands. EUROCOURSE commissioned a Report on the meaning of Directive 95/46/EC for health research and the ethical foundation of using patient data for cancer registries and cancer search in particular. It was decided to combine both in one Report as the three issues are very much interrelated. Our ambition has been to submit a Report which both describes the present law accurately but also challenges certain existing views for legislation to come such as the ‘update’ of the European privacy protection Directive mentioned.
The full report can be downloaded here. (PDF 398 Kb)

Evert-Ben van Veen was medeauteur van een NIVEL studie om ten behoeve van Zichtbare Zorg indicatoren en etalage+ gegevens van over de huisartsenzorg te berekenen en te publiceren. Zie I. Stirbu-Wagner et al., Haalbaarheidsstudie indicatoren huisartsenzorg en Etalage+ -gegevens op de NIVEL site (zoeken naar het nieuwsbericht op 14 juli).

Evert-Ben van Veen has co-authored an article with Peter H.J. Riegman on consent issues relating to biobanking residual tissue as distinct from biobanking specifically collected human tissue. This article appeared online in the Human Genetics Journal on 4th August 2011.

Evert-Ben van Veen, TvGR 7 - November 2010 p 510-526
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Evert-Ben van Veen co-authored an article on the use of Cervical Cytology Biobanks in Europe together with Marc Arbyn and others. It also examined the ethical and juridical aspects, and was published in the International Journal of Biological Markers (2010; 25: 117-125)

English translation (slightly amended) of a paper which appeared in the Tijdschrift voor Gezondheidsrecht, volume 33, number 6 (October, 2009)
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E.B. van Veen, 2009, nr 5
najaar 2009
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