'Suppose, for a moment, that both your mother and grandfather had died of an inevitably fatal neurological disease, and someone offered you a test to see if you were likely to get it, too. If the test showed up positive, you'd live knowing that one day you'd probably die of it, too, possibly as young as your forties. Would you go ahead? Or would you rather not know?
It's a dilemma facing Emma East, a 24-year-old mother of three young children.
And as presymptomatic genetic testing becomes possible for more and more conditions, it's the kind of dilemma that growing numbers of others will also face.
It didn't surprise Emma's mother, nor Emma, when in February 2009 she was diagnosed with Motor Neurone Disease (MND), from which she died nine months later. The disease had already killed Emma's grandfather.
'Although Mum and I knew that most forms of MND aren't inherited, we had this inkling that ours was, and we both worried that one day we'd get it,' says Emma.
'So when I recently discovered the genetic developments in MND, I requested an appointment. I just felt that knowing was better than this awful worry. I felt it would enable me to plan better, too, because if my life expectancy could be just 20 years, I'd live very differently.
But when the appointment came, some doubts crept in. Emma can't be sure, for example, how she would react to the news.
'I can only base it on how I've responded when I've been told bad stuff in the past. Also, it takes two months to get the results and for me, that would be torture.'
In addition, Emma wonders if it may be better to be tested in the future when more is known about MND.
'If, 20 years ago, someone was told they'd definitely get breast cancer, it would have felt like a death sentence, but there are many treatments now as a result of growing research. Would it be better to wait a while in the hope that the same happens with MND?'
The biggest thing holding Emma back, though, is that she is not in a long-term relationship. 'I think I'd want someone to fall back on on bad days if the test was positive and, if that was the case, to have someone to support me through the disease itself.'
While the number of people seeking presymptomatic genetic testing is growing, most people decide not to go ahead. 'Genetic information is a one-way street in that, once you know something, you can't 'unknow' it,' explains Alastair Kent, director of the Genetic Alliance, the charity for people with inherited conditions. 'Many, therefore, come to the conclusion that they'd rather not know, at least for now, if they've drawn the short straw of a life-limiting disease.' http://www.nzherald.co.nz/health/news/article.cfm?c_id=204&objectid=11342166
Is it better to know the future? What do you think?
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