Monthly Archives: July 2013

Consultation with UK Cancer Genetic Centres

Consultation with UK Cancer Genetic Centres

Developing the infrastructure, processes and capabilities required for cancer gene testing to become routinely available to those that can benefit is an essential component of the Mainstreaming Cancer Genetics (MCG) programme.

To facilitate this initiative the programme held a consultation day with senior clinical representatives from all 24 UK Cancer Genetic Centres on 1st July 2013. The day was highly productive with animated discussions about the challenges and opportunities facing the NHS in implementing broader cancer genetic testing.

There was strong consensus in several areas, with 82% of attendees agreeing they would like to be able to offer more tests. Additionally 92% thought that there is/will be increasing interest from non-genetic clinicians (e.g. oncologists) to have more cancer gene testing in their patients.

Importantly, 100% thought there is/will be increasing interest from patients and the public to have cancer gene testing.

It was also clear that change is already underway, with the majority of those surveyed (86%) saying their genetic centre is already carrying out some activities with respect to increasing cancer gene testing and/or mainstreaming.

However, there are significant challenges to overcome. There is currently large variation and inequity in service provision across the country for complex, multifactorial reasons. There was consensus among the Cancer Geneticists that this should be addressed but also frustration that many of the reasons are outside their control.   

The MCG programme has begun implementing a new model for cancer gene testing, with one pilot underway in the gynae unit of the Royal Marsden, and a similar pilot in the breast unit to begin soon. Protocols, educational materials, supporting information and outcomes from the pilot will be made available to other UK genetic centres wishing to use this information to inform development of their cancer genetic services.

Outcomes from the UK Cancer Genetic centres consultation day contribute to a number of the programme’s workstreams, including: Implementation, Education & Engagement, Evaluation and Ethics.

Integrating Cancer Genetics into Routine Clinical Practice Information Day

Engaging with clinicians, patients and the public to communicate the value, availability and implications of genetic testing in cancer patients is a core aim of the Mainstreaming Cancer Genetics (MCG) programme.

Towards this aim we held an information day at the Royal Marsden Education & Conference Centre on 6th June 2013. It was attended by clinical staff from a range of organisations and professions, including oncologists, genetic counsellors and clinical geneticists.

Demand for genetic testing to aid cancer management is increasing among patients and clinicians. The development of consistent, robust and equitable systems to cater to this demand is a key challenge in providing the best possible treatment for patients. New technologies mean that genetic testing is now cheaper and quicker than has previously been possible. 

Genetic testing has traditionally been carried out by geneticists, often following a referral from oncology. The MCG programme is developing systems for non-geneticists to carry out genetic testing in cancer patients directly. This ‘mainstream’ model of genetic testing will allow more genes to be tested in more people than has previously been possible.

The study day included presentations from clinicians and scientists working on the programme, which is trialling the new model in cancer patients at the Royal Marsden Hospital. At every stage of the process, non-geneticists are able to refer patients to genetics should more discussion be required. All patients in whom mutations are identified are automatically sent a genetics appointment.

Through the use of interactive voting handsets, the audience were asked a range of questions relating to genetic testing in cancer.

Interestingly, 87% of the audience felt the public are positive about genetic testing becoming more available, but when asked the same question about health professionals, the figure dropped to 58%. One reason for this could be that a lack of confidence in using and discussing genetic information, with 71% of the audience considering this the primary concern of health professionals.

However, there was a clear consensus that the NHS should adapt to gain maximum benefit of genetic information for its patients, with 92% of the audience in agreement.

This information day forms one part of the programme’s ongoing Education & Engagement workstream.