‘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 (www.mcgprogramme.com) and Genetic Alliance UK (www.geneticalliance.org.uk) and forms part of the programme’s Education and Engagement workstream.