Genetic Testing Citizens
The new Chief Executive of the National Health Service (NHS) in England, Simon Stevens, was recently reported arguing that the NHS must be transformed to make people’s personal genetic information the basis of their treatments (1).
His proposition is unsurprising since it is in line with the efforts of successive UK governments to build a DNA database in the NHS in England by stealth. In particular, sequencing every baby at birth and storing whole genomes in electronic medical records is 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 would allow commercial exploitation of the data.
Building a DNA database within the NHS would be a massive waste of public money. But it would also create a system of total surveillance which would enable the government and private companies to track every individual, not to mention their relatives. This is not speculation; as wikileaks revealed, the United States government is already actively collecting DNA samples and biometric data on foreign officials and populations.
Commercial companies wish to exploit genetic information to market products such as drugs and supplements to healthy people, based on genetic risk assessments. If current trends continue, this will harm, not benefit, health: it is personalised marketing not personalised medicine. The potential for misuse is very high. Doctors could 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. There is also the danger that prescribing would be driven by vested interests, rather than medical need: with high financial costs and more harmful side effects. Genetic risk assessments could also be misused, leading to stigma or discrimination, for example by insurers.
Why does the NHS want to collect genetic information?
There is one element of truth to Simon Stevens’ remarks. Some cancer drugs have been successfully tailored to genetic mutations that arise in the cancer tumour. However, 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. This is because 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).
Why did it not work? An important misconception, apparently shared by Simon Stevens, is that genes are good predictors of most diseases and adverse drug reactions in most people. However, contrary to misleading claimsmade to promote the Human Genome Project, this is not true (5). Moreover, even if it were true, there is no evidence that genetic selection of individuals, for example into high risk and low risk groups, improves outcomes or cuts costs. All of which begs the question of the purpose of taking and storing genetic information as a default medical procedure.
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 (6). Patrick Chung, a 23andMe board member and partner at the venture-capital firm NEA told Fast Company (7): “…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,” he says, “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 limited applications that do work, not on introducing misleading and harmful screening of the whole population and creating unnecessary, expensive databases. Certainly it should not be driven by ulterior commercial and government interests.
Dr. Helen Wallace is Executive Director of GeneWatch UK.
(1) New NHS boss: service must become world leader in personalised medicine. The Guardian. 4th June 2014. http://www.theguardian.com/society/2014/jun/04/nhs-boss-world-leader-personalised-medicine
(2) Children could have DNA tested at birth. The Telegraph. 8th December 2013. http://www.telegraph.co.uk/health/healthnews/10501788/Children-could-have-DNA-tested-at-birth.html
(3) GeneWatch UK PR: GeneWatch UK report exposes plans to build a DNA database by stealth in the NHS. 23rd May 2013. http://www.genewatch.org/article.shtml?als[cid]=569352&als[itemid]=572536
(4) Pharmacogenomic Warfarin Dosing: Worth the Cost? Medscape. 23rd December 2013. http://www.medscape.com/viewarticle/818088
(5) Human Genetic Predispositions – the hidden politics of genomic science. Bioscience Resource Project. http://www.bioscienceresource.org/resources/human-genetic-predisposition/
(6) Gene startup 23andme casts eyes abroad after U.S. regulatory hurdle. Reuters. 6th May 2014. http://in.reuters.com/article/2014/05/07/23andme-genetictesting-idINL2N0NT05I20140507
(7) Inside 23andMe founder Anne Wojcicki’s $99 DNA Revolution. Fast Company. 14th October 2013. http://www.fastcompany.com/3018598/for-99-this-ceo-can-tell-you-what-might-kill-you-inside-23andme-founder-anne-wojcickis-dna-r
Dr Helen Wallace is Executive Director of GeneWatch UK