Last week, the Progress Education Trust launched a new project called ‘Breast Cancer: Chances, Choices and Genetics’, inspired by Angelina Jolie’s risk-reducing mastectomy surgery. It’s a topic I was previously keen on avoiding. I hoped to get through an entire science-writing career without using the ‘C’ word, but alas. I’ve reviewed the first of the four events for BioNews (have a read then come back here).
By dint of deadlines and word counts, I had to leave out so much I wanted to say about the evening. The rest of this post contains a hodgepodge of offcuts from my review.
Women who inherit ‘faulty’ BRCA genes may face up to an 85 percent lifetime risk of developing breast cancer. Part of the event was about understanding what this number means and to whom it applies. Humans are not natural probabilistic thinkers (in my opinion). We navigate the world using our flawed and biased reasoning machinery and yet we deal with statistical risks on a daily basis.
(For the super-nerdy readers, we grapple with a frequentist universe in a Bayesian way. For the less nerdy, don’t worry about that sentence – you will live happy and fulfilled lives without needing to think about that ever again.)
During the event’s introduction, Professor Gareth Evans touched on how somebody’s feeling of personal risk can be different to their understanding of risk. This nicely illustrates the clash within us as thinkers and as feelers.
We make decisions about our lives and our futures based on the information we receive about risks. Indeed, others may make life and death decisions on our behalves based on information like this. Getting it right – or getting it least wrong – is vital. (For excellent explanations of all this, read Ben Goldacre’s Bad Science blog and the book Risk, by Dan Gardner.)
Risks change due to many factors, not least age. Baroness Delyth Morgan talked about the efficacy of screening and surgery – sensitive topics swayed by strong emotions. Nobody wants to be playing with people’s lives as mere statistics, but we must consider the likelihood of people dying with cancer rather than because of it and begin to make decisions about who receives (or can receive) what. How you draw these lines in the sand, I don’t know. Healthcare economists and their ilk have my eternal respect.
The clinicians also talked about the EMBRACE study, which is following 7,500 women and men. This got me wondering what research, if any, has been done with non-Western populations… (I’m yet to find out.)
Men were mentioned a few times during the event. I didn’t realise men carrying BRCA mutations faced increased risks of breast and prostate cancer. Christine Patch, the chair, followed this with a mention of how much conversations focus on the women carrying the faulty genes, but these genes affect entire families.
As I mention in my review, finding out you’re a carrier leads to hard conversations and considerations with your family – especially those genealogically above and below you (an unnecessarily fancy way of saying ‘your parents and kids’) who might also carry the ‘faulty’ genes. Patient organisations like BRCA Umbrella may provide a wellspring of support for such things.
Towards the end of the evening, there was a brief call of support for, as well as a couple of digs at, the Sun’s “Check ‘em Tuesday” Page Three campaign, associated with CoppaFeel. Apparently the original ‘article’ contained misinformation (I haven’t ‘read’ it myself).
Speaking of fact-checking, the night rounded out with calls for journalists to engage more actively with their expert sources, running copy by them so needless errors don’t creep into articles. Seems sensible – these affect people’s lives, after all.
The next event – ‘Risk Assessment: Breast Cancer, Prediction and Screening’ – will take place on Thursday 8th May 2014, 6.30pm at University College London.