The 10-Year Health Plan

Genomics - Guest post by Robert Dingwall

Some of us are old enough to remember the press conference on 26 June 2000, when Tony Blair and Bill Clinton proclaimed that the Human Genome Project had opened the Book of Life. A Golden Age of genomic medicine was about to dawn. Everyone would be able to benefit from personalized health care, tailored to their unique genetic heritage. Twenty five years later, almost to the day, the Department of Health and Social Care has trailed its plans to genotype at birth every baby born in a UK hospital…in order to deliver personalized health care! 

Back in 2000, social scientists who study science and technology recognized that the Book of Life was another case study in the hyping of innovations in order to keep the money tap flowing. Investors, public and private, were being sold hope. It worked very well. The leaders of the Human Genome Project were awarded public and professional honours and the resources kept coming. But the products did not. Post-Covid, and with health economists asking hard questions about value for money in US research funding, the cycle of hype and hope needs renewal – and the Department of Health and Social Care has fallen for it. 

Mass genotyping is a technology in search of a purpose that it has failed to find. It has not taken off for three main reasons: it is scientifically illiterate, profoundly unethical and hopelessly uneconomic. 

Twenty five years ago, politicians might have been excused for thinking that there would be a simple relationship between genomes and health futures. The OGOD – one gene, one disorder – model was foundering but had not yet sunk. There are indeed some conditions, like Huntington’s Disease, where it works, but these are rare. If there are genetic influences on health, they arise from the actions, and interactions, of multiple genes, which are shaped by environmental conditions before birth and throughout the life course. The impacts are relatively small. There are occasions where it is useful to have the information, because of a family history or because genetic heritage may affect the action of some drugs for serious conditions, but these are cases for specific tests as and when needed, not for mass screening. 

It has long been a fundamental principle of public health ethics that mass screening is only justifiable when it gives a clear signal about risk, with few mistakes in over- or under-diagnosis, and where something beneficial can be done with the information. This is, for example, why the current calls for mass prostate cancer screening are so controversial. Existing tests are not very accurate and the consequences of unnecessary medical or surgical interventions are unpleasant. The neonatal programme would be mass screening in the hope of finding something that could be treated. It is very different from the informed consent involved in volunteering to give genetic information for a clinical trial or a biobank. If the health department still had an advisory group on ethics, this concern might have been drawn to their attention. 

Should the department press ahead regardless, there are also basic questions about the economics of personalised medicine, which have been around for a long time. The pharmaceutical industry is dominated by mass production technologies that spread their costs over vast numbers of patients. Anything that breaks this scale into smaller niches inevitably increases costs. Personalised medicine is an attractive pitch for a politician seeking public favour but if each patient is to have a unique regimen tailored to their distinctive genetic heritage and likely future, costs rapidly escalate. The day when the UK is a health service with a nation attached is brought ever closer. 

A government health department should not be acting simply as a cheerleader for the aspirations of medical science, and its associated industries. Politicians spending public money have a duty to ask the hard questions about the evidence of likely benefit, about the rights and wrongs of an action, and about the likely costs. If the health department is not doing this, then others must seek to do it for them. Otherwise we simply end up with a vast , largely unregulated, biometric database, available for linkage to identity cards, digital or otherwise…Gattaca is a dystopian movie not a blueprint for the future. 

Robert Dingwall is emeritus professor of sociology at Nottingham Trent University