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Yes: John Harris
Professor of Bioethics at the University of Manchester
Sequencing the human genome of every child at birth would lead to a wonderful increase in knowledge, but whether it is cost-effective procedure is doubtful. But I am in favour of the principle. People should be able to choose to do this for their children if they wish, and my “yes” will be firmer when this is more affordable.
At the moment, although we can sequence the whole genome, the information to be gleaned is not wonderfully helpful in predicting the course of an individual’s life and what diseases they may or may not develop, except in the case of single-gene disorders, such as Huntington’s chorea.
In the case of breast cancer or heart disease, faulty genes do not mean that an individual will definitely develop breast cancer, for example, but that an individual has a higher probability of developing the disease.
It could be very useful to know at birth that a girl had the faulty variant of the BRACA1 or BRACA2 gene. It would allow the individual to be vigilant, for example, by regular inspection of the breasts and mammograms. In the future, treatments that are less invasive than some of the treatments we have now, such as preventative mastectomies, might become available, and these advances will give more point to early genetic information. When it comes to heart disease, the situation is less clear.
Knowing that you have a genetic disposition is not necessarily helpful. Prevention advice — such as eating well, exercising regularly and not smoking or drinking to excess — is advice that the general population is given in any case. Of course, knowing your likelihood of developing heart disease might give you an added incentive to take better care of your health.
There is also the issue of pharmocogenetics, the idea that variations in human genetics lead to variations in response to drugs. The idea of drugs tailored to suit our genetic make-up is relatively young, but as this field develops it may well present us with a very good reason to sequence everyone’s genome. Another such reason is that as more and more whole genomes are sequenced, the more our knowledge will increase and, hopefully, with knowledge will come the good uses to which it can be put.
Genetic discrimination and genetic privacy, however, are hugely important issues. We know that we cannot keep genetic information private. We leave our DNA everywhere — on coffee cups, in the hairdresser’s — so what we need is powerful legislation to ensure that genetic information is not misused. Until 2014 there is a moratorium on the use of predictive genetic tests in insurance, put forward by the Human Genetics Commission and accepted by the Association of British Insurers. Ideally, we need national legislation that would make this permanent and punish the misuse of genetic information.
If people want to have their genome sequenced, they should be able to. I can see no reason why they should not.
No: Dr Helen Wallace
Director, GeneWatch UK
Blood samples are already taken from every baby born within the NHS and are stored and linked to electronic medical records. The Government first proposed screening every baby’s genome in its 2003 genetics White Paper, but it was considered too costly.
This idea is back — and it could destroy the NHS. Gene tests are poor predictors of common diseases and none meets medical screening criteria for the general population. The way that multiple biological and environmental factors interact to cause most diseases in most people is poorly understood and — like most complex systems — never likely to lead to reliable predictions. This means that rival companies’ genetic risk assessments will often disagree. One scientific study found that half the genes in tests already being sold are not likely to be linked to the claimed diseases. Yet ministers oppose gene test regulation on the ground that this would stifle innovation.
The Government is spending more than £12 billion on a centralised system of electronic medical records because it wants to build a genetic database within the NHS. In 2007 it set up a ministerial-level strategy group — co-chaired by GE Healthcare, the American company — to implement genetic “prediction and prevention” of disease. The plans of Lord Darzi of Denham, the Health Minister, to outsource diagnostics would allow such companies to bypass the medical profession and make genetic risk assessments with no scrutiny.
Scientists recently told the House of Lords Science and Technology Committee that they expected to classify 95 per cent of the population as being at risk of one or more diseases. This allows mass-scale “personalised” marketing of health products and services, including that of medicines and supplements to the healthy population.
A small number of genetic tests can help to indicate which patients may respond well to specific drugs but such tests have not delivered on their early promise. These tests are better given when they are of use, not in a mass screening programme.
This debate ties in with data-sharing proposals before Parliament — in the Coroners and Justice Bill — that would allow the Government to build a genetic database in the NHS without consent. The British Medical Association has warned that the Bill “strips patients and doctors of any rights” regarding sensitive health information. It allows ministers to give companies access to DNA and electronic medical records stored in the NHS. Once a genetic database exists, the Bill then allows routine access to be given to the police. DNA could then be used to track any individual or their relatives, allowing government surveillance of the entire population.
Readers who find this plan disturbing should contact their MP. This is your last chance to prevent this Brave New World and to defend your children’s future.
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