Stealth DNA database would be 'dangerous'

A new genetic research centre at London's Olympic park could pave the way for the creation by stealth of a DNA database of the whole population – which would be a dangerous infringement of everyone's rights, says campaign group

British Prime Minister David Cameron is backing a controversial plan to build a DNA database of the whole population in the National Health Service. He signalled his support for the plan today by announcing a new genetic research centre at the Olympic park, and a consultation on whether people's medical data stored in the NHS should be shared with private companies without their knowledge or consent.

If the rules are changed, it is likely that samples of blood or saliva taken for medical tests in the NHS would be used to build the database, including millions of blood spots taken from babies at birth. The plan depends on not asking for consent because only 7 per cent of people approached to take part in the United Kingdom's Biobank genetic research study, which now stores half a million samples, agreed to hand over their DNA and give commercial companies access to their data. Building a DNA database of everyone in the NHS is also supported by the Wellcome Trust and the Human Genomics Strategy Group. The plan is for the Wellcome Trust Sanger Centre to sequence the DNA contained in the samples, producing a string of letters representing the genetic code. The data will be stored in the cloud by the European Bioinformatics Institute, based at the same site in Cambridgeshire.

The difference between each genome and the so-called 'reference genome' will be stored in up to 60 million 'variant files': one for every person in the population – it is unclear whether people in Scotland are included. These files will be linked to each individual's electronic health record, containing data about their illnesses and care collected in the NHS. The Olympic park would become home to a cloud computing facility and to people who could analyse the data, based at companies like Google, as well as to the new research centre run by GlaxoSmithKline, announced today.

The idea of predicting who would be genetically susceptible to common diseases or adverse drug reactions was promoted by scientists in the lead up to the Human Genome Project, but genetic predictions have turned out to be poor in most cases because multiple genes play a small and complicated role in most diseases and drug responses. A planned medical DNA database in Iceland was never completed as accessing medical data without consent was ruled unconstitutional, and the company DeCode which had access to the data was later declared bankrupt, although it continues to trade as a private company. DeCode and gene testing company 23andMe, which is funded by Google, have both been largely unsuccessful at creating a viable business selling genetic risk predictions directly to consumers due to concerns about privacy, unexpected findings, and the poor predictive value of most tests.

The purpose of the plan to sequence the whole genome of everyone in the NHS is to change the business model: by first sinking the costs – with the public sector paying for much of the infrastructure and for collecting and storing people's electronic health records and DNA – and then feeding back predictions made about risk of disease or drug response, whether or not they are likely to be useful. People, especially babies, will have no say about whether their whole genome is sequenced as this will become a 'duty' to the NHS: they will only get a choice about how much 'information' is fed back. Much of this information will be misinformation because genetic tests do not meet medical screening criteria for use in the general population. However, it can still be used for personalised marketing of further tests and health products based on claims about genetic risk.

There are many objections to this plan: First, storing people's DNA sequences in their medical record would allow a DNA database of the whole population to be built by stealth. Anyone with access to this database could track any individual using their DNA and identify their relatives. Second, a DNA database of the whole population cannot be made anonymous: anyone with access to it will be able to work out the identity of individuals even if they are not given names and addresses. Third, legitimate medical research involves seeking people's informed consent, so they know what research is being done by whom and why. Fourth, there are many ways in which private companies could misuse this data for marketing purposes rather than legitimate medical research, including making misleading genetic risk predictions. And finally, the costs of building such as database and expanding the number of healthy people who receive medication could bankrupt the NHS and lead to people who refuse to take part being denied proper care.

People who are concerned about these plans should contact their doctors and MPs. Building a DNA database in the NHS by stealth is a dangerous infringement of everybody's rights. The prime minister should not be using the Olympics as a cover for selling people's medical records and personal genetic data to the highest bidder.

Dr Helen Wallace is director of the Genewatch UK campaign group