A government plan to sequence the entire genetic codes of 100,000 Britons will boost the country’s biotechnology industry as well as providing new insights into the treatment of serious diseases such as cancer and heart disease, its proponents claim.
However, critics said the proposal is effectively a pilot scheme for a far bigger operation to place the genome sequences of the entire population on computer so that they can be accessed by drug companies and even the police, as well as doctors and clinicians.
Government officials emphasised that access to the genome information of tens of thousands of NHS patients will be strictly controlled and restricted to bone fide health professionals. When used for wider research purposes, the data will be anonymised so that it cannot be linked to any one individual, they said.
But not everyone is convinced by such bland reassurances about how easy it is to protect the confidentiality of genome data. Helen Wallace of the pressure group GeneWatch said that it is difficult if not impossible to anonymise the vast amounts of data encoded in a full genome sequence.
“It’s very difficult to do when you are doing the whole genome sequence because different items of data can be put together to identify an individual. And this is widely seen as a pilot project for sequencing the genomes of the entire population,” Dr Wallace said.
“There is a serious proposal to sequence the genomes of everyone, link this data to the medical records of these people and share that information with pharmaceutical companies and anyone else with a vested interest, including the police,” she said.
The government has promised to implement a “public communication and engagement plan” to address the “aspirations and concerns” of people who are worried about where its proposals on genome sequencing will lead.
However, the Prime Minister’s office, which was responsible for handling the announcement, slipped out the genome-sequencing plan late on Sunday with little prior warning, stoking fears that it has something to hide.
The proposals are contained in a report called Strategy for UK Life Sciences which outlines policies that will help to make the UK a world leader in genomics and informatics – the sciences that link genes and diseases with the health of the wider population.
David Cameron, in a foreword to the report, says that harnessing the power of the genomic information locked away in peoples’ DNA sequences will not only help the health of patients but unleash new drugs and treatments that will create wealth and jobs.
“Hundreds of thousands of businesses, for example, are built on top of the Apple App Store, and we want to see the emergence of genomic platforms in the UK that similarly support the emergence of new companies and innovations,” Mr Cameron says.
The report says that genome sequencing will be at the centre of a new way of treating patients with “stratified medicine” that takes into account the genetic differences between people that can affect whether individuals are able to respond to certain drugs.
“For example, research using large groups of patients has revealed that there are thousands of links between variants of an individual’s DNA sequence and complex diseases such as heart disease and diabetes,” the report says.
“These types of studies should enable researchers to identify the underlying mechanisms of a patient’s disease, narrowing down the diagnostic categories and allowing doctors to choose the best therapy for that individual,” it says.
What has made this all possible is the plummeting cost and time it takes to sequence the full 3 billion “base pairs”, or genetic letters of a person’s complete genome.
“The price of genome sequencing has fallen off a cliff. It has fallen 100,000 fold in ten years. We’re heading for £100 a genome and that will happen in the very near future,” said Sir John Bell, professor of medicine at Oxford University and a senior government adviser on medical genetics.
“We’re now getting to the point where the use of medicines in patients can actually help to deliver medicines and understand cancer much better, to understand a range of diseases in a much more precise way,” Sir John told Radio 4’s Today programme.
“There is no question that genetics is a key component of all common diseases, some more than others, but there is an element of genetics involved in all disease and there is the possibility that it will help in a whole variety of ways, including its use in new drugs,” he said.