23 May 2013
In a new report published today, GeneWatch UK exposes the Government's plan to build a DNA database by stealth in the NHS in England (1). The plan, proposed by the Wellcome Trust (whose former Director Sir Mark Walport is now Chief Scientist) and backed by the Prime Minister, is to include the whole genome of every person in the NHS in England in their electronic medical record. This data will be stored by the new Health and Social Care Information Centre and sold to private healthcare and pharmaceutical companies, Google and government-run institutes worldwide, including in the USA and China. Other personal records stored by the Government, for example from social care and education, will be linked to people's electronic medical records and also shared in future.
Claims by the Prime Minister that data will be "anonymised", by removing names, are completely meaningless because identities could be deduced from other information, such as age, medical conditions and postcode, or by comparing genomes with DNA taken from a person's coffee cup or stored in public databases. The objective of the plan is "creative destruction" of the NHS so that every individual has a personalised risk assessment from birth to death, which can be used for personalised marketing online, massively expanding the healthcare market away from poor, sick people to rich healthy ones.
"Total government surveillance of every citizen and the end of privacy between doctors and their patients are inevitable if a DNA database is built within the NHS", said GeneWatch UK Director Dr Helen Wallace. "Every adult and their children will be tracked using their DNA, and private healthcare records from the NHS will be sold around the globe. Genes are poor predictors of most diseases in most people and personalised risk assessments will lead to the marketing of fear and medicalisation of vast swathes of the English population. The costs of unnecessary follow-up of misleading risk predictions could bankrupt the NHS and harm the health of vulnerable people".
The infrastructure to implement the plan is already being built and medical records in England are about to be transferred from GPs to the Health and Social Care Information Centre, without people's knowledge or consent. Private healthcare company Bupa is one of the first companies to be granted access. The Google-funded gene testing company 23andMe has a major interest in analysing people's DNA and Asia's richest man Sir Li Ka Shing is already an investor, via a public-private partnership with Oxford University. There has been no democratic debate about the plan.
"This proposal shows a shocking disregard for democratic processes and for people's right to choose where their personal and genetic information can end up and how it can be used. NHS medical records and blood tests are not a plaything of ministers to be sold off and sucked offshore in support of the business plans of companies like Google. When will the Government prioritise the health and rights of ordinary people, instead of selling out to vested interests?" said Dr Wallace.
Following the recently published report by the Caldicott Committee, of which Walport was a member, the right of individuals to give fully informed consent to specific research projects is being totally removed. Similar proposals are being discussed in the European Parliament and weakening data protection also forms part of the EU-US trade agreement negotiations. Health Secretary Jeremy Hunt has said he will allow an opt-out, but this will remove people's right to choose to opt in to legitimate medical research. Similar data-sharing plans were proposed by Walport under the previous Government, but rapidly dropped following massive opposition from the public and the medical profession and the Conservatives and Liberal Democrats.
For further information contact:
Dr Helen Wallace: 01298-24300 (office); 07903-311584 (mobile).
Notes for editors:(1) A DNA database in the NHS: your freedom up for sale? GeneWatch UK report. May 2013. http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/DNAinNHS_GWbriefing_fin.pdf