Risk Management: Breast Cancer, Business and Patents

Progress Educational Trust
Darwin Lecture Theatre, Darwin Building, University College London, Malet Place, London WC1E 6BT
5 June 2014 6.30pm-8.30pm
This public event was organised by the Progress Educational Trust (PET) at University College London, and was supported by the Wellcome Trust. The event formed part of the PET project 'Breast Cancer: Chances' (which launched with the preceding event 'Relative Risk: Breast Cancer and Genetics', continued with the event 'Risk Assessment: Breast Cancer' and concluded with the event 'Breast Cancer Risk: Facts, Fictions and the Future').
A podcast produced by James Brooks, in which he interviews members of the speaker panel, can be listened to using the player below or alternatively can be downloaded by clicking here (.mp3 14.9MB).
Simon Hazelwood-Smith has written a summary of this event for PET's flagship publication BioNews. The event is also discussed by Matthew Thomas in his article 'Ensuring your genes don't affect your insurance' on the Wellcome Trust's blog, and by Dr Eva Sharpe in her article 'Patenting - not always black and white' on the Institute of Cancer Research's Science Talk blog.
Angelina Jolie made headlines around the world in 2013, when she wrote publicly about her decision to undergo a prophylactic double mastectomy and criticised 'the cost of testing for BRCA1 and BRCA2', saying that this cost 'remains an obstacle for many women'. She was alluding to the cost of Myriad Genetics' patented BRACAnalysis test for cancer-causing mutations in the BRCA genes, which is due to be succeeded by the myRisk Hereditary Cancer test. Jolie's criticism is just one example of how the relationship between breast cancer and the commercial world can become the subject of public debate and controversy.
Less than a month after Jolie went public about her mastectomy, the US Supreme Court ruled in a long-running case whose plaintiffs included three breast cancer patients and whose defendant was Myriad Genetics. The Supreme Court ruled unanimously (.pdf 146KB) that natural human genes such as breast cancer predisposition genes cannot be patented, but Myriad retains claims in numerous patents that still confer protection on its tests, and the company's longstanding US monopoly on BRCA gene testing is likely to continue. Meanwhile, the UK has its own controversies - a moratorium on the use of genetic information established in 2001 (and reviewed regularly, with the next review due in 2017) means that one's genes cannot affect directly one's insurance premiums, but information about family history (including family history of breast cancer) can still be used when setting premium rates.
Early detection of breast tumours can also lead to insurance becoming more expensive for greater numbers of patients (some insurers will refuse to pay for risk-reducing screening or surgery, even if the risk is identified after the insurance policy was taken out) and may affect a patient's ability to obtain or maintain a mortgage. Finally, there are broader concerns about the UK's care.data project, which will make NHS patient data available to commercial third parties - following recent scandals, the Government has given assurances that this data cannot be used to raise insurance premiums, but critics of the project remain sceptical.
This event saw these and other aspects of breast cancer discussed in relation to business and commerce, from contrasting perspectives, by a panel of experts.

Dr Angela Kukula
Director of Enterprise at the Institute of Cancer Research
Alexander Denoon
Partner at Lawford Davies Denoon
Dr Ian Cox
Member of the Association of British Insurers' Genetics Panel
Jenny Dunlop
Counselling Practitioner

Graeme Laurie
Professor of Medical Jurisprudence and Founding Director of the Mason Institute for Medicine, Life Sciences and the Law at the University of Edinburgh

  Partners and supporters:
  Wellcome Trust