Month: October 2018

Genomics England welcomes publication of the Code on Genetic Testing and Insurance

The Department of Health and Social Care and the Association of British Insurers (ABI) have announced the publication of the Code on Genetic Testing and Insurance today.

The Code is an agreement between Government and the insurance industry – with a commitment from insurers to not ask customers about predictive genetic test results when applying for insurance.

The Code updates a previous agreement – known as the Concordat and Moratorium on Genetics and Insurance – which was renewed every three years. The Code: will now no longer expire after three years, but will be reviewed; has been written to be more customer-friendly; and commits to a joint Government/ABI annual report to keep consumers updated on any developments.

Genomics England Chief Executive, Professor John Mattick, said:

“Genomics England welcomes today’s publication of the Code on Genetic Testing and Insurance. The success of genomic medicine depends on the understanding, acceptance and trust of the public – and this agreement between Government and the insurance industry provides reassurance that genomic information will be used only for the benefit of patients and their families.”

Genomics England selects Congenica to provide clinical decision support services

Genomics England has chosen Congenica as its Clinical Decision Support Service partner to help deliver the new NHS Genomic Medicine Service, which rolls out this month.

The decision follows a competitive tender process involving the leading providers of genomic diagnostic decision support. Congenica’s SapientiaTM platform was selected using robust criteria that included usability, clinical accuracy, case throughput and commercial value.

SapientiaTM has already been validated within Genomics England’s 100,000 Genomes Project and will help clinicians, scientists and researchers to make informed medical decisions – generating actionable clinical reports.

Professor John Mattick, Chief Executive of Genomics England, said:

By working with Congenica from the start of the 100,000 Genomes Project, we’ve been able to provide high quality variant interpretation of genome sequences to the NHS, helping deliver benefits to patients at scale. Now that we are embarking on the next exciting step in our journey to embed genomic medicine in healthcare, Congenica will continue to play an important role with Genomics England in delivering results to clinicians and diagnoses to patients.

Read more on Congenica’s website.

IQVIA and Genomics England launch the first real-world research platform with integrated clinical and genomic data

IQVIA™ (NYSE:IQV) and Genomics England today announced a collaboration to develop a platform that will connect clinical and de-identified genomics data to accelerate treatment advancements for patients. This alliance will enable faster and more efficient drug research, more robust evidence to support treatment value, and greater access to personalized medicines.

Using IQVIA’s E360™ platform, authorized researchers will have privacy-protected, technology-enabled access to Genomics England’s patient-consented, de-identified data to create custom clinical-genomic datasets and run leading-edge analytics on genomics and observable traits.

Combining IQVIA’s leading real-world technologies and services experts with Genomics England’s datasets, network and infrastructure to generate, organize, and enhance genomic data, can make the United Kingdom one of the most attractive places for life sciences companies to invest. The deeper insights about patient populations and faster ability to understand the value of potential treatments could also make the UK a catalyst for analytic and scientific advances.

“IQVIA brings together deep healthcare and life sciences domain expertise to manage and curate real-world data with advanced analytical technologies. Working together, we can unlock the potential of these datasets to advance research and benefit patients in the UK as well as those throughout the world,” said Joanne Hackett, Genomics England’s, chief commercial officer.

Together, IQVIA and Genomics England will enable academic and commercial customers to conduct a wide range of research including: association studies of genomics and observable traits, comparative efficacy and safety trials, and burden-of-illness and discovery analytics using the de-identified data in a secure environment that protects patients’ privacy. Life sciences companies that use IQVIA’s leading clinical and observational research will be able to provide genomic testing to patients in parallel or as part of their clinical programs. This will help advance precision medicine and patients’ access to novel therapies – with the goal of delivering the right drugs to the right patients at the right time.

“Drawing insights from clinical-genomics datasets is the future of real-world research, and we are delighted to work alongside Genomics England as a pioneer in this evolving field,” said Jon Resnick, president, IQVIA Real-World and Analytics Solutions. “Our collaboration advances the analysis of these complex datasets, which could accelerate the discovery of precision therapies, improve access and health outcomes, and deliver upon our Human Data Science vision.”

Secretary of State for Health and Social Care announces 5 million genomes within five years

Health and Social Care Secretary Matt Hancock

Secretary of State for Health and Social Care, the Rt Hon Matt Hancock MP, today set out an ambitious vision for genomic medicine in the NHS – with plans to sequence 5 million genomes over the next five years.

The announcement, made as part of the Secretary of State’s speech to the Conservative Party Conference in Birmingham, recognises the critical importance of genomic medicine to the future of the NHS. Mr Hancock announced:

  • Expansion of the 100,000 Genomes Project to see 1 million whole genomes sequenced by the NHS and UK Biobank in five years.
  • That from 2019, the NHS will offer whole genome analysis for all seriously ill children with a suspected genetic disorder, including those with cancer. The NHS will also offer the same for all adults suffering from certain rare diseases or hard to treat cancers.
  • Revealed the aspiration to sequence 5 million genomes in the UK, within an unprecedented five-year period.

Health and Social Care Secretary Matt Hancock said:

“I’m proud to announce we are expanding our 100,000 Genomes Project so that one million whole genomes will now be sequenced by the NHS and the UK Biobank. I’m incredibly excited about the potential for this type of technology to improve the diagnosis and treatment for patients to help people live longer, healthier lives – a vital part of our long-term plan for the NHS.”

 Genomics England Chair, Sir John Chisholm, said:

“Today’s announcement by the Health and Social Care Secretary recognises the pioneering work of Genomics England, NHS England and others. In just five years, the 100,000 Genomes Project has amassed the world’s largest database of whole genome sequences with associated clinical data. In doing so, we have created the complex infrastructure and proved the concept of genomic medicine at scale in the NHS.”

 Genomics England CEO, Professor John Mattick, said: 

“Genomics England welcomes today’s announcement, which will accelerate the UK’s global lead in genomic healthcare into patient benefit, through improved diagnosis and prevention of disease. Genomics England is already working with the NHS to introduce genomic analysis into routine care, with rare disease and cancer patients receiving diagnoses that lay the foundation for more effective treatments. In sequencing up to 5 million genomes in the next five years, understanding of the link between genetic information and the risk of disease will grow, bringing new discoveries, new awareness and wider benefits to patients, and deliver the most efficient, effective and equitable healthcare system in the world.”

Genomics England Chief Scientist, Professor Mark Caulfield, said:

“Genomics England welcomes this ambitious new vision for genomics, which assures the UK will continue to be the global leader in the application of genomic medicine. As the UK database expands to 5 million sequences and beyond, new insights will help to save many lives, both in the NHS and around the world.”

Marc Stapley, Executive Vice President Strategy and Corporate Development, Illumina – Genomics England’s sequencing partner – said:

“As the industrial partner of Genomics England for the 100,000 Genomes Project, Illumina supports the scale and vision of the UK government in its endeavours to place genomic medicine as one of the pillars of healthcare.“

What do we know about public attitudes to genomics?

What do we know about public attitudes to genomics?

Ahead of a major public dialogue on genomic medicine, Ipsos MORI, Genomics England and Sciencewise have summarised recent findings on public attitudes to genomics, and identified areas for future research.

With support from Sciencewise, we have asked Ipsos MORI to find out how the public feel that the NHS should best take forward genomic medicine into its national programme of clinical care.  As part of this project, we have reviewed previous public engagement and dialogue activities to help us inform our own work.

Though it is not an exhaustive review, this short report identifies seven areas where more research is needed and the implications for our public dialogue:

  1. Awareness of genomics is low: we need to help participants understand key ideas like: what are genes? What is data science? How does the NHS work at the moment?
  2. Younger people and ethnic minorities sometimes have different views about genomics and we should listen to their voices in particular.
  3. Genomics is associated with both benefits and risks.  There are some uncertainties which make the benefits and risks hard to weigh up, such as the scope of impact of genomics long term; future findings from genomics which are unknown today; how quickly the science will develop; and how genomics will be used outside medicine by governments, insurers and others.
  4. Important areas for public debate include how the findings of genomics should be conveyed to patients and, crucially, their families; and what do people consent to, and the role of advice and counselling in this.
  5. Future research should ask the public their views on insurance uses of genomic information, the role of public and private partnerships, and the role of international data sharing.
  6. Public, patients and clinicians are all concerned about the current and future capabilities of the NHS. The dialogue will need to explore how the NHS can develop the skills and capacity required for a genomic medicine service – and what public expectations are.
  7. While we know a lot already about how to communicate key medical, data and genetic concepts, the dialogue should cover the best ways to explain how genomics will be ‘rolled out’ into the NHS more widely.

The full literature review can be downloaded here.

What do you think we should ask the public about genomics? 

We are currently developing our materials for our dialogue, so, whether you are involved personally in genomics and genomic medicine either as a clinician / healthcare professional or researcher, or as a patient, or have an interest in it, we’d be delighted to hear your thoughts on our report and what we should cover in our dialogue.

More information on our genomics dialogue 

For more information on the dialogue or to tell us what you think about our report, please get in touch with Simon Wilde, Genomics England, s.wilde@genomicsengland.co.uk / 07793 142 501 or Graham Bukowski, Ipsos MORI Public Dialogue Centre, graham.bukowski@ipsos.com / 0203 059 4678.