09 June 2014
ByAppeared in BioNews 757
The backdrop to the third event in the Progress Educational Trust's (PET) 'Breast Cancer: Chances, Choices and Genetics' series was the Myriad Genetics gene patenting legal saga, which came to a conclusion last year with Myriad being denied a patent on the isolated forms of the BRCA genes (see BioNews 709).
For those with a taste for such things, the case was particularly engrossing as it reified so many current debates in science: the role of the profit motive in rewarding innovation; the ethics of claiming universal, naturally-occurring products as private property, and all the myriad (sorry!) knock-on effects for privacy, insurance and intellectual property (IP). No wonder it has sparked such debate.
This discussion was organised around three main topics laid out by chair Professor Graeme Laurie: the truths and myths of the biotech and pharmaceutical industry's impact on cancer research and care, the role that patenting plays, and finally the wider implications of commercial interest in genetics and large-scale datasets.
Four speakers, from diverse backgrounds, offered opinion and expert advice on these topics. As is the norm for PET events, each was given a few minutes to present their view before questions, discussion and debate with an eager audience.
Dr Angela Kukula, director of enterprise at the Institute of Cancer Research (ICR), explained her organisation's viewpoint on collaboration with industry. The added capital and facilities of industry allow them to take research further towards the eventual development of products, and so is mutually beneficial, she said.
The ICR's policy on patents is not uniform. In some cases, such as in drug discovery, their position is that patenting encourages investment via the opportunity of exclusivity. Other discoveries such as biomarkers are not patented to allow as much freedom of access as possible. Intriguingly, Dr Kukula said that there are occasions when the ICR will patent genes, in order to prevent others from doing so, again in an attempt to allow freedom of access.
Alexander Denoon is a partner at a law firm working in the life sciences sector. He continued on the topic of IP and patenting and is clearly a firm believer in providing adequate rewards to promote innovation in the life sciences. He introduced the concept of 'regulatory IP' by which regulation could offer rewards such as temporary monopoly in areas like drug development for a rare disease.
The third speaker was Dr Ian Cox, a former GP who now works in insurance and sits on the genetics panel at the Association of British Insurers (ABI). His presentation was short, giving a welcome explanation of the workings of critical illness insurance and his role in the ABI.
The final presentation was from Jenny Dunlop, a counsellor specialising in fertility, who had breast cancer herself ten years ago. She brought a personal perspective to the debate. She was particularly concerned about potential exploitation of vulnerable and sometimes desperate patients with untested treatments and the excesses of commercialisation.
The ensuing Q&A focused heavily on Dr Cox, who explained insurers' policies and his opinions openly and sincerely. In the UK there is a moratorium that prevents predictive genetic testing being used by insurance companies in calculating premiums. Dr Cox was in favour of this, as he believes that the flexibility that comes from working under a moratorium works well within a rapidly changing field.
The discussion was lively and informative, and moved to broad questions on large genetic data sets and regulation. Denoon spoke in favour of openness, as it is this that drives the innovation of treatments and therapies. He was of the opinion that there is a public paranoia about disclosing genetic information that is an inhibition to this.
For myself, I felt 'paranoia' was a bit strong. Not unreasonably, genetics is perceived as being particularly personal; third-party disclosure is therefore a highly sensitive subject.
There seemed to be consensus among the audience and panellists on the lack of public understanding of the insurance and biotech industries' involvement in cancer and genetics, resulting in a widespread suspicion of their motives.
Dr Cox explained that large data sets are used by insurance companies so they can understand current trends in cancer incidence and survival and therefore set their premiums based upon the evidence. It was a persuasive argument; it seems unlikely that a company would have reason to attempt to personally identify individuals from genetic data as is sometimes feared.
The sharing of genetic information to approved researchers and companies is one of the proposed features of the NHS's care.data project. Each panel member was asked under what conditions they would be willing to share their own genetic profile. A commonly voiced requirement was for anonymisation.
However, as Professor Laurie pointed out, complete, guaranteed anonymisation is unlikely to be possible. Here, I felt myself siding with Denoon; the potential benefits of large-scale sharing of genetic data should outweigh concerns of personal identification.
The idea of private companies making obscene profits from others' misfortune is frequently raised in opposition to commercialisation in cancer and healthcare and Dunlop voiced such concerns here. She also suggested that greater transparency on where pharmaceutical companies' money was reinvested would be welcome. Denoon countered that publicly traded pharmaceutical companies already provide this but it is not widely read and that profits are rarely large enough to be considered obscene.
This was a highly informative event, with many important points on industry's involvement with cancer and genetics covered. Although I did feel that the scope of the evening might have been slightly too broad, the quality of discussion was excellent and prompted me to examine my own opinions.
As genetic testing becomes more widespread it is vital that we examine the way in which we commercialise and regulate new technologies and consider the knock-ons into areas like insurance. Events like this are an excellent way to do just that.