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Genome data privacy - are you in or out?

How far would you go to help science find a cure for a disease that kills hundreds or even millions of people every year? Most of us are happy to donate money to medical research charities – but what if you were asked to donate your genome, the unique map of your genes and DNA, to scientific research? As the field of genomics continues to grow, this may be a question we are all asked to consider in the not too distant future.

Paramount Recruitment is working in partnership with Genomics England to place the brightest minds in the industry on its ground-breaking 100,000 Genomes Project, the world’s largest national sequencing project of its kind. Mapping the genomes of around 70,000 people, participants on the project include NHS patients with a rare disease plus their families, and patients with cancer.

The aim of the study is to create a new genomic medicine service for the NHS to transform the way people are cared for. Patients may be offered a diagnosis where there wasn’t one before, and later down the line, there is the potential for new and more effective treatments.

Being involved in the project has got us thinking about the future of genome mapping in the UK. Once the 100,000 Genomes Project is complete, it’s unlikely to be the end of genome data collection in this country – it is potentially just the tip of the iceberg. The next step could be a more widespread harvesting of genome data for medical research. The Korean Genome Project, started in 2008, aims to map the genomes of all 50m Koreans by 2030; Kuwait are currently trying to map the genome of its entire population (3.5m people); and Iceland has already succeeded in mapping two thirds of its 300,000 strong population. Could the UK follow suit?

By collating a bigger sample of genomes and combining the information with medical records, researchers will be able to undertake a much wider analysis of the cause, diagnosis and treatment of disease, providing a more accurate picture of groups which are susceptible to certain diseases and any contributing lifestyle or environmental factors.

Potentially we could be looking at an ‘opt out’ system, similar to the law that British doctors are hoping to pass which gives presumed consent for organ donation. Since the ‘opt out’ legislation was implemented in Wales in 2015, the number of organs for transplants has doubled. Imagine the potential for genome mapping with this system in place.

The problem is that unlike our organs, which we understand can help others live after our deaths, no-one is really quite sure what will happen to our genome information once we donate it en masse. Most of us will be happy for the information to be given to medical researchers, but less happy for it to be given to insurance companies or drug companies. Of course, if we aren’t sharing the information with pharma companies, how do we expect them to develop the drugs that could potentially cure the diseases we will know so much more about?

There are so many ethical debates that will accompany any proposal for widespread genome mapping of the population. Do doctors have a duty to tell patients about their risk of diseases based on their genome, do patients even want to know? If we know about a disease in advance, should science be able to intervene and edit our genes? Does that alter who we are? And of course, can genome data be used to clone people?

The genomics industry is certainly challenging what can potentially be achieved in medical research and drug treatment, but it is also opening up a wider philosophical debate about how people perceive their own identity as something more than just a unique series of chemical elements.

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5th October

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