In the news .....

I did see it, and it is a wonderful advance but what a difficult situation if you requested not to be told if something awful showed up for your future if your siblings might also be affected who might want to know... a dilemma indeed.

I didn't see the BBC interview but did complete the questionnaire. I wonder why someone would opt to be tested but not want to know the results? Wouldn't it always niggle away at you? Personally I opted to be told if there were any results that were either fatal or could be dealt with and opted out of being told about the vaguer results...I thought I would want to know if I needed to get my house in order or get some urgent treatment but didn't fancy having some tiny possibility of a minor or annoying ailment hanging over my head.

The gist was that health professionals thought telling someone about an imminent risk was fine, but not about a risk which might not occur for 20-30 years. They felt it would cast a shadow over a lifetime.

As someone who answered that I would still want to know, my view seems to have coincided with the mass response...... but perhaps we didn't think it through carefully enough.
I have reflected this morning, and would not change my answer.
Anyone else?

Inthefields regarding the 'casting a shadow over a lifetime' - surely it depends whether an individual can modify the risk? If you know that you have say, an inherited increased risk of heart disease, but that if you modify your lifestyle you can reduce that risk significantly, most people would want to know?
If on the other hand, the risk was of something for which there was no cure or prevention, that would probably be a different matter.

jane -
I do agree about the complex emotional issues involved. However, with a genetic issue in my own family, I can state that I would definitely want to be aware of a "possibility in the future"

A different genetic issue was faced by my niece whose mother had breast cancer, and whose maternal grandmother died from the condition. There are various other instances within her family. My niece had an elective double mastectomy, once she had had her children, to avoid any possibility that it could occur for her. Her sister chose not to even consider the issue ..... and has been under treatment for breast cancer for the past two years.

That is not to say that either approach is right or wrong ....it is far too personal for that. I think one should be able to "tick a box" allowing for the info to be provided if found. This gives people a freedom of choice, denied them if health professionals take the stance that "it wouldn't be good for us to know".

In the 'bad old days' people were often not told a terminal diagnosis because it was not felt to be good for them. Attitudes and times have changed, and the concept of not revealing all pertinent results of genetic testing seems retrograde.

Just my spin