Increasingly the EU maps out the status of its citizens health. It is done in various projects and the various efforts do not seem to be noticed by the regular integrity lobby – it is easier to make your case against this type of invasion of privacy if it is done for police or governmental benefits. In reality, I would say it is more worrying when done in the name of public health since I firmly believe that if we get the knowledge on how to alter our DNA it will be done. And it might start with cures for diabetes but end in adjusting the citizens to better fit into society. Some of the efforts done right now are the BBMRI, the Health-e-Child and various registries here exemplified with the cancer registry.
To start with the BBMRI. Biomedical research needs citizens who participate - or at least they need to get hold of samples of your DNA. One major issue will be how to collect the samples. Over 200 organizations in 24 EU Member States are planning an EU infrastructure, the Biobanking and Biomolecular Resources Research Infrastructure, BBMRI, to deliver as they say:" The samples. The data. The tools." Tools to do what I wonder? On the website they claim that they already today controls 10 million samples but that they aim to increase that number. All is funded by the European Commission with a grant - the agreement has no 212111.
The Health-e-Child is another EU funded project entering into this area. The aim is not to use real DNA sample but they still want to have one single database for all clinicians where they can store all forms of biomedical data. This is not easy to uncover, when you read what they are about it’s not really obvious what they do. To use their own description: "Vertical integration of information across biomedical abstraction, including all layers of biomedical information (i.e., genetic, cell, tissue, organ, individual, and population layer) to provide a unified view of a person's biomedical and clinical condition is the corner stone of the HeC project." Well, they try to put it in a bit more simple language: "common vehicle by which all clinicians will access, analyze, evaluate, enhance, and exchange biomedical information of all forms". Unlike with the BBMRI I cannot find any discussion about data privacy issue on their site.
Eurocourse, is a 3-year project funded under Framework-7 (I.e. also EU money) on best practice among European cancer registries, "and to prepare them for future challenges". Read data privacy issues. One of their aims are "close collaboration with biobanks...~
I listened to a cancer registry expert from the UK having an outburst of anger over the EU Data privacy act and the hassle it had created – continuing that only the individual rights lobby saw any problems with cancer registers since the benefits where so great and obvious to all others. Well if it is so obvious that the registers are good for us all there should be no issue with demanding informed consent, should there?
Still in the European Journal of Cancer issue 7 2009 in an article from Helen Saul their news editor I found this quote from Dr Hans Storm (Danish Cancer Registry, Copenhagen, Denmark) "The interpretation of the European Directive on Privacy (95/46) is very heterogeneous. In some countries, they have almost completely closed down data linkage by insisting on informed consent, which is not always possible. In Estonia, cancer registries have no access to death certificates for cancer patients, which is a very important measure of quality in cancer registration. It makes comparison between some countries virtually impossible."
I assume that since the Cancer Registers actually already faced the problems with data privacy Eurocourse they do take the issue quite seriously. Thus they have established a Working Party on privacy and they also plan to set up a committee including a legal advisor to "help researchers navigate barriers caused by data protection legislation, and improve the systems in place for dealing with requests for research on the data".
Hans Storm continues to defend the collection of data without consent: "no harm has ever come from this data collection, only good. "
Meanwhile in Sweden the so called PUK registry with DNA samples from all Swedes born 1976 or later have taken the opportunity and changed their routines. It is no longer possible to require that you or your child's samples are destroyed. It is now up to PUK to decide whether to anonymize or destroy it. This was sneaked in the regulation as a compromise after among others MEP Christofer Fjellner had objected to the government ideas of using the registry more regularly in police activities.
State driven medical research today supporting police activities tomorrow – and then what – adopting the educational system after our inherited abilities and then maybe also ensure we are not gay, overweight or mean?