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Genetic testing of citizens opens the door to total population surveillance by governments and companies

The new Chief Executive of the National Health Service in England, Simon Stevens, has reportedly argued that the service must be transformed to make people’s personal genetic information the basis of their treatments. This appears shockingly ignorant of the irrelevance of genetic information to most people’s care, writes  Helen Wallace.

Plans to sequence everybody’s genomes in the NHS are driven by commercial and government interests and are not in the public interest.

Successive UK governments have made attempts to build a DNA database in the National Health Service (NHS) in England by stealth, by sequencing every baby at birth and storing whole genomes in electronic medical records, a plan backed by Health Secretary Jeremy Hunt. The current version of this plan would involve sharing whole or partial DNA sequences (genomes or genotypes) with companies like Google, which would use genetic information and health data to calculate personal risk assessments for feedback to patients. Massive investment from taxpayers would be required as part of a public-private partnership that would allow commercial exploitation of the data.

Building a DNA database within the NHS would be a massive waste of public money and would also create a system of total surveillance which would allow the government and private companies to track every individual and their relatives.

Commercial companies wish to exploit genetic information to market products such as drugs and supplements to healthy people, based on genetic risk assessments. This will harm, not benefit, health: it is personalised marketing not personalised medicine. Doctors would be replaced by computer algorithms used to market medication, massively expanding the drug market to include large numbers of healthy people, rather than smaller numbers of (often poorer) people who are sick. Prescribing would be driven by vested interests, rather than medical need: with high financial costs and more harmful side effects. Risk assessments could also be misused, leading to stigma or discrimination, for example by insurers.

Some cancer drugs have been successfully tailored to genetic mutations that arise in the cancer tumour, but attempts to select drugs for people based on the genetic make-up they are born with (their genome or genotype) have largely been a failure as genetic differences only account for a part of individual differences in metabolism. For example, a recent study found that targeting warfarin treatment based on genetic make-up did not improve health outcomes, although this application was regarded as the ‘poster child’ of this approach. Genes are also poor predictors of most diseases in most people, contrary to misleading claims made to promote the Human Genome Project.

The online gene testing company 23andMe, funded by Google, has been forced to withdraw its gene tests from the US market due to failure to prove they can reliably predict individual risks of many common conditions using computer algorithms. The company now wants to target the UK market, where genetic testing is not regulated. Patrick Chung, a 23andMe board member and partner at the venture-capital firm NEA told Fast Company: “…23andMe will make money by partnering with countries that rely on a single-payer health system…Let’s say you genotype everyone in Canada or the United Kingdom or Abu Dhabi…and the government is able to identify those segments of the population that are most at risk for heart disease or breast cancer or Parkinson’s. You can target them with preventative messages, make sure they’re examined more frequently, and in the end live healthier lives, and the government will save massive expenses because they halted someone who’s prediabetic from getting diabetes. 23andMe has been in discussion with a bunch of such societies“. Yet there is not a scrap of evidence that this approach is good for health. This is because genomic tests have limited clinical validity or utility so in reality there is no health benefit to targeting segments of the population in this way.

Genetic testing remains useful to diagnose rare genetic disorders, mainly in babies and young children, and whole genome sequencing has helped to identify new mutations causing these diseases. Rare familial (largely inherited) forms of many common diseases also exist, including breast cancer, but these account for only a small percentage of cases of these conditions.

Use of genetic testing in the NHS should focus on prioritising resources for the applications that do work, not on introducing misleading and harmful screening of the whole population and creating unnecessary, expensive databases.

Helen Wallace is executive director of GeneWatch UK

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