Today's mainstream media are falling over themselves to simply re-hash the optimistic Press Release about the end of the 3 month small scale pilot in the Manchester region, of the controversial UK Biobank project which is intended to allow researchers to compile and analyse a huge (500,000 people plus) DNA database, with associated lifestyle factors
e.g. the BBC reports:
The UK Biobank aims to obtain DNA samples from up to 500,000 people aged 40-69 and track their health.
It is hoped the database will be used to find cures for killers, including heart disease, diabetes and cancer.
The project received unanimous support from a team of international experts and its financial backers following a three-month pilot around Manchester.
Obviously such a scheme has enormous potential for improved public health and the chance of massive profits for the private sector companies who get involved.
GeneWatch have some doubts about whether the scientific protocols will work, essentially because of the difficulty of tracking the lifestyles of half a million people, over many years into the future.
There are also massive potential dangers to privacy and security, and we are not yet convinced that any of these have been addressed properly.:
Many of our regular readers will groan when we remind them that the NuLabour Government Health Minister now in charge of this UK Biobank project is none other than Andy Burnham MP formerly a junior Minister at the Home Office, where he was in charge of the controversial Police National DNA Database - the largest one in the world, but which includes the DNA fingerprints and retained human tissue samples, of many innocent people and even of innocent children.
Andy Burnham was also in involved in denigrating opponents of the controversial National Identity Register, such as the NO2ID Campaig, he was also involved in personal attacks, behind the protection of Parliamentary Privilege, against Simon Davies and the London School of Economics group research project , the well respected Identity Project Report.
Why should this former spin doctor, Andy Burnham be trusted by the public, on anything that he says regarding the UK Biobank project ?
This NIR centralised database will, surprise, surprise, through its transaction audit trail literally track your life and lifestyle each and every tiime you use your Biometric ID Card.
- Who believes that if the UK Biobank researchers are not getting enough "lifestyle tracking" data in the future, that they will not lobby for access to the the NIR audit trail, "for public health" reasons (which could come inder "national security" and/or "securing the efficient and effective provision of public services") , as already permitted, by the already passed and on the statute book, Identity Cards Act 2006, which is an Enabling Act. ?
Remember that the project does not need to have DNA samples from all 60 million people in the UK to be of "interest" to the state security authorities. The samples and DNA analyses are likely to be more detailed than those used for criminal DNA fingerprinting, and may well include other similar techniques such as RNA Analysis or Chromosome Analysis, or Protein Folding Analysis, which are not mentioned by, and are therefore exempt from, the Human Tissue Act 2004
Remember that the current National DNA Database is already being speculatively data mined for Familial DNA matches, and research is under way to try to identify racial and ethnic groups, skin, eye and hair colour etc.
- What is to stop the Forensic Science Service from paying for access to the UK Biobank to do such research ?
- Where are the legal guarantees that there will never be an attempt to swap data and merge the datasets from the UK Biobank and the National DNA Database, in lieu of paying each other research access fees ?
- Where are the public published results, by internationally acclaimed privacy and security experts, that the current Manchester pilot scheme is properly secure from insider and external data theft and hacking etc ?
- Where is the published information security architecture, which will assure us that the scaled up, full size system will actually be more secure than the pilot. The full sized system will present a more valuable target, and so will be even more at risk, from even more sophisticated and expensive attacks, and it will, presumably be accessible to even more people than the pilot scheme.
- Since this is not a Government scheme per se, although it will be partially funded by the Medical Research Council, it will not be considered to be part of the Critical National Infrastructure. or if it is, it will only get a low priority for advice and protection from the CESG , MI5 etc, unless this is done on a private sector consultancy basis, for which there may well be no allocated budget..
- How can such a large amount of genetic data ever be anonymised properly ? See the writings of Ross Anderson, Professor of Security Engineering at the University of Cambridge on the subject of Medical Data Systems, including the Icelandic Genebank project" which is smaller than the proposed UK Biobank system. Remember that the Biobank data could easily be cross referenced and matched with other DNA records for which name, address etc. personal details are available, through familial DNA matching
There is an UK Biobank Ethics and Governance Council, which is supposed to give us confidence, but their distinguished scientific membership is out of its depth, when considering IT and computer data security and privacy issues, where the whole project will come under well funded, technically adept, organised criminal, terrorist or domestic and foreign intelligence agency attacks. There will also be a huge financial incentive for industrial or commercial espionage.