A new report on genomics in the NHS

Posted on February 15, 2012 by

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Genomics – technology that harnesses our knowledge of genetics – is set to be a major component of our future healthcare system. The Human Genomics Strategy Group of the Department of Health have published a report in which they explore the potential, the logistics, and the ethics, of genomics in the NHS and set out their recommendations for how the government should proceed to ensure the NHS is prepared for the uptake of new technologies.

Background

The ability to test for specific mutations or forms of genes has been available to doctors for over a decade now. But genomics is much more than that. It includes the ability to identify specific strains of bacteria and viruses; to determine which drugs you will respond to best, based on your genes; and even the possibility of predicting what diseases you will contract as you grow old by sequencing and analysing your whole genome.

Some of these possibilities invoke important moral questions, ones that we as a society must address together. And all present the questions of how best to adopt and deliver these new services, and also how we will use the information that they will yield? These are the issues that the report aims to address.

What does the report say?

The UK is at the forefront of genetic technology, much of it having been created here. But in some respects we could be accused of being slow adopters; late last year Sir David Nicholson, Chief Executive of NHS England, published his report on innovation in the NHS saying that more must be done to encourage the uptake of new technology throughout the whole health service. As the technologies become more advanced and reliable, it is vital that they are adopted and exploited. For example, in so called “stratified medicine” patients must be genetically typed so that they can be prescribed the medication that best suits their genes. More and more new drugs emerging on the market are of this sort and the NHS will get left behind if it doesn’t build on its capacity to perform the required tests. The report suggests that the government publishes a strategic document setting out how the NHS should adopt genomic technology.

Dealing with the data deluge

The huge volume of data that mass genetic testing within the NHS will generate is difficult to grasp. But, like other forms of health data, it will be a valuable resource for researchers and clinicians. The report recommends that the Department of Health (DH) and BIS develop proposals for establishing a central repository and also the computer services (bioinformatics) to process the information. It also recommends this includes a database or web portal that small and medium enterprises (SMEs) could access and build upon to aid innovation.

People are rightly concerned about how their health data is stored and used, and this is especially true for their genetic data. The report urges the government to continue its provisions for high quality public engagement on the ethical, legal and social issues surrounding genetic testing. Importantly, a national model of consent must be sought to allow the data to be used for public benefit whilst maintaining public trust.

Delivering tests nationally

Within the new structure of the NHS, most health services will be commissioned at a local level. But due to the rapid pace of technological change in genomics the report’s authors believe that genomic services should be commissioned at a national level by the NHS Commissioning Board (NHSCB). This will ensure uniform quality, turnaround, cost and data standards. To do this well, the board will need:

  • an NHSCB member with  explicit responsibility for genomic services
  • a national network of experts to advise
  • to ensure tests costs the same across the country and that they are paid for through normal local commissioning funds so that doctors use them alongside other diagnostics only when appropriate
  • developing minimum national quality standards for the tests
  • ensuring that the validity, utility and quality of all tests are approved by the National Institute for Health and Care Excellence (NICE)
  • ensuring that all data from the tests, whether conducted by public or private labs, will be made available on national databases, which should ensure patient confidentiality and data protection

The report recognises that work is ongoing to assess the existing capability of the NHS, making special mention of Cancer Research UK’s Stratified Medicine Programme, which aims to ensure standardised, high quality, cost-effective genetic testing of tumours is available for people with cancer across the UK.   The report stresses that DH and the NHSCB should work together to develop a service delivery model for genomic technologies with the objective of putting in place a network consisting of Genomic Technology Centres, Biomedical Diagnostic Hubs and Regional Genetics Centres. This would mirror the new model of pathology services within the NHS.

Skills

The ever expanding role and influence of genomics within the health service demands a workforce trained to perform the tests, interpret the results and translate them into information that can be used by doctors and understood by patients. This will require education, which will be overseen by the new NHS department, Health Education England (HEE). The report outlines how this should be gone about, including collaborations with other education institutions (primarily universities) to ensure a well trained future workforce.

What does this mean for medical research?

Genomics has huge potential to help patients. But if it is going to, it is important that the NHS is prepared to take full advantage of these new technologies. New treatments being developed cannot help patients without complex diagnostics to identify those they can help and a trained workforce to administer them.

Just as important is enabling us to use the genetic data the NHS can collect to help us do research to develop the next generation of treatments and diagnostics. For this it is important that this data is integrated into the national health database already in development, making it safely and securely available to researchers while protecting patient confidentiality.

This report and the recommendations it makes provide a good basis to look at how we might achieve these aims. These will need to be considered and integrated with other services and structures within the health service, now is a good time to do this as the government makes changes to the NHS.

 

Posted in: Policy