GeneWatch UK PR: Genetic information is irrelevant to most people's care

4th June 2013

GeneWatch UK today criticised a speech by the new NHS England Chief Executive Simon Stevens, in which he reportedly argued that the NHS must be transformed to make people's personal genetic information the basis of their treatments (1). 

"Stevens appears shockingly ignorant of the irrelevance of genetic information to most people's care" said Dr Helen Wallace, Director of GeneWatch UK, "Plans to sequence everybody's genomes in the NHS are driven by commercial interests and are not in the public interest".

Successive governments have made attempts to build a DNA database in the 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 (2). 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 (3). Massive investment from taxpayers would be required as part of a public-private partnership that allowed commercial exploitation of the data. 

"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 and risk assessments could also be misused, for example by insurers. 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 to track every individual and their relatives", said Dr Wallace.

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 (4). 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 (5). 

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", said Dr Wallace. 

For further information contact:

Dr Helen Wallace: 01298-24300 (office); 07903-311584 (mobile)

Notes for Editors 

(1)    New NHS boss: service must become world leader in personalised medicine. The Guardian. 4th June 2014.

(2)    Children could have DNA tested at birth. The Telegraph. 8th December 2013.

(3)    GeneWatch UK PR: GeneWatch UK report exposes plans to build a DNA database by stealth in the NHS. 23rd May 2013.[cid]=569352&als[itemid]=572536

(4)    Pharmacogenomic Warfarin Dosing: Worth the Cost? Medscape. 23rd December 2013.

(5)    Gene startup 23andme casts eyes abroad after U.S. regulatory hurdle. Reuters. 6th May 2014.


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