Last night a group of us headed back to the Dana centre to fill our brains with some more geek fulled knowledge. The talk this time was a bit closer to our hearts looking at how far patient empowerment and knowledge can be pushed and with what consequences.
The talk entitled ‘My beautiful genome’ explored the science behind genetic testing and its future roll out to the general population, and looked at the possible ethical and practical consequences of doing so.
Lorna Frank, the author of ‘My beautiful genome’ discussed her experiences getting her genome sequenced and learning the risk factors that her genetic profile predisposes her to. She likened the genetic revolution to that of the PC revolution – something that will take ours and the next generations by storm and become so widely accessible that in her view all individuals will be armed with their genetic profile.
But what are the consequences of this? Ethically is it right to be informing patients that they are predisposed to diseases like Alzheimer’s without firstly being able to directly predict that they will actually develop the disease and in full knowledge that currently there is no cure or possibility to prevent onset? Does this lead to greater anxiety, potentially lower quality of life and ultimately greater pressures on the medical system as patients armed with greater knowledge appear at far greater frequency in front of their GP? Lorna’s view was no and that the current studies underway are showing no negative impact of this nature. I would question the bias of the sample at the moment with only those truly interested and well informed individuals being tested. If the genetic revolution does explode in the way predicted then I think there would need to be a far more robust infrastructure of pre and post patient counselling as well as education and information on what the results actually mean – they do not correlate to a direct prediction and as such the general population would need to have their expectations managed or we would have an entire host of terrified hypochondriacs on our hands!
However it did raise a load of interesting questions and is something that once the science evolves a bit further could be quite tempting. Most interesting to me was the more psychological side of things – the thought that some of my more annoying personality traits maybe down to my genetic profile and so ‘not my fault!’ It would re-open the discussion of nature versus nurture – with the potential that far more of our personalities than we think are actually outside of our control.
Either way a fascinating debate and one that will only become more heated as the technology and availability of these tests increases.