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Top surgeon makes the case for open health data



One of the country’s most eminent medical researchers says we must be prepared to share personal genomic information on a large scale

One of Britain’s most eminent medical scientists has stepped in to the political row over the sharing of data by public bodies with an eloquent argument for NHS patients to share details of their genetic make-up.

In an article for the Telegraph, Ara Darzi, professor of surgery at Imperial College London, says that in order to benefit from breakhroughs in precision medicine “we must be prepared to share our personal genomic information on a large scale”.

Darzi says the world of medicine is going through a revolution: “In place of the blunderbuss treatments of today, in which the same one-size-fits-all therapy is delivered to patients with the same (or similar) symptoms, we are moving rapidly to an era of precisely targeted interventions tailored to individual patients and diseases, based on their genetic make-up.

For example, he noted the Institute of Cancer Research announcement that 1,000 patients have benefited from a fast, accurate, affordable cancer gene test to assess their risk of breast cancer.

“Advances in genetics made possible by the decoding of the human genome are transforming our understanding of the molecular basis of disease,” Darzi wrote. “Today it costs $1,000 to sequence a genome – compared with $100 million just eight years ago. New technologies are rapidly being adapted for routine clinical use.”

Ethical challenges

However the age of “precision medicine throws up new ethical challenges which demand urgent public debate. “It involves gathering vast amounts of personal genetic information and linking that to a host of environmental factors in order to understand an individual’s predisposition to disease and determine which is the best treatment.”

Hence the need for access to highly personal data. “In order to benefit further from these developments, we must be prepared to share our personal genomic information on a large scale to validate the genetic markers that research suggests will predict the risk of disease and the likely treatment response.”

At the moment, what Darzi concedes are “well-founded concerns about sharing data” are the most significant barrier to realising the promise of precision medicine. “So building trust between the public, scientific researchers, and clinicians that the sharing of information will yield better care is vital.”

Darzi argues that “sharing data demands a strong ethical approach which must be based on a standardised process for obtaining informed consent. As part of this, patients should receive information about the benefits – both to them personally and for the public good. Gaps in the regulatory frameworks that guide the ownership and sharing of data must also be filled to make precision medicine viable.

“We are on the brink of a transformation in health care which will make it more effective, more affordable and more responsive – but only if we can address the fears about cost, confidentiality and data ownership. We must make a coordinated effort to surmount the remaining barriers and seize this opportunity.”

Image by Cyril Vallee, CC BY-SA 2.0 through Wikimedia


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