Monthly Archives: February 2014

‘How Gene Testing Can Help People With Cancer’ – A Consultation with UK Cancer Charities

Engaging with clinicians, patients and the public to enhance understanding of the benefits, availability and implications of genetic testing for people with cancer is a key aim of the Mainstreaming Cancer Genetics (MCG) programme.

Towards this aim, the MCG programme held a consultation event for representatives from any UK cancer charity on Friday 14th February at the Royal Marsden Education & Conference Centre. The aim of the event was to inform cancer charities and other organisations of the work being carried out on the MCG programme, and to learn about how gene testing affects these organisations and the people they represent.

The event was attended by a wide range of representatives including those from breast, ovarian, colorectal, prostate, blood, bone and brain cancer charities. Also in attendance were representatives from patient support and advisory services, policy makers and practising clinicians.

When surveyed, 100% of attendees agreed that gene testing can provide important information for the management of cancer. In addition 94% believed there is increasing interest from patients to have gene testing.

Strikingly, 100% of those attending thought that cancer patients should have access to gene testing, and 97% believed that the NHS should adapt to gain maximum benefit of genetic information for its patients.

Initially, only 12% felt confident that the NHS will adapt to gain maximum benefit of genetic information for its patients, highlighting the importance of the MCG programme. However, at the end of the event, there was strong consensus that cancer charities and related organisations have a key role to play, with 82% stating that they believe their organisation can help to improve access to gene testing.

The event included talks from Professor Nazneen Rahman, Head of Genetics at the Institute of Cancer Research (ICR) and the Cancer Genetics Clinical Unit at The Royal Marsden, Alastair Kent, Director, Genetic Alliance UK and Dr Susana Banerjee, Consultant Medical Oncologist at The Royal Marsden.

The event was held in partnership between the MCG programme ( and Genetic Alliance UK ( and forms part of the programme’s Education and Engagement workstream.

100 ovarian cancer patients benefit from BRCA1 and BRCA2 tests through new ‘oncogenetic’ pathway

Developing the infrastructure, processes and capabilities required for routine genetic testing of cancer patients is an essential component of the Mainstreaming Cancer Genetics (MCG) programme.

To deliver this, the programme has developed an ‘oncogenetic’ gene testing pathway, which brings gene testing directly to the patient through their existing oncology appointments. Previously, patients could only have a gene test via referral to genetics departments.

The oncogenetic pathway allows members of the cancer team who have completed online training to order gene tests for eligible patients directly, but retains the flexibility to refer patients to genetics if more detailed discussions will be helpful.

Any patient found to have a gene mutation is seen by a geneticist. Those with normal results can be referred in the standard manner, if required. This represents a more patient-centred, flexible gene testing service. It also allows more people to have access to gene testing.

More than 100 ovarian cancer patients have now benefitted from BRCA1 and BRCA2 gene tests via the oncogenetic gene testing pathway developed by the programme. Formal evaluation is underway. To date the response from patients and clinicians has been very positive.

In 2013 NICE recommended people with >10% chance of having a mutation in either the BRCA1 or BRCA2 gene should be offered testing. This includes >10,000 cancer patients per year. However, limited capacity and high costs of traditional gene testing pathways limits the BRCA1 and BRCA2 testing doctors are currently able to provide for their patients. The oncogenetic gene testing pathway could be used to deliver the NICE recommendations cost-effectively.

This success of the pathway was communicated to the press at an event held on Wednesday 22nd January 2014. View the press release here.

The story was also reported by the following organisations:

 This pilot study forms part of the programme’s ongoing implementation workstream.