Predictive gene testing: Would you want to know? Why or why not?

From NYTimes online: Readers comments blog in relation to predictive gene testing article on March 18, 2007:

“In Sunday’s Times, Amy Harmon reported on the story of Katharine Moser, who chose at age 23 to learn the results of a DNA test that revealed she would inevitably develop Huntington’s disease, an incurable brain disorder.
If you carried the gene for a fatal genetic disease, would you want to know? Why or why not?”

Comments so far…

While frightening I would prefer to know. It gives one the opportunity to be proactive rather than having the role of helpless victime thrust on one when it is too late. This is an horrific destiny but before symptoms manifest, each day could be relished and lived fully.Also I would not want to have children putting them at risk so knowing would be essential.

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Only if I could do something about it.

— Posted by *

I absolutely would want to know. As a young woman in my early 30s, I’m at the peak time of my life to have children. If I were to find out after I had kids that I had Huntington’s (which does run in my family, although thankfully no longer in my branch), the guilt of having passed down the gene likely would kill me as fast as the disease. It just seems selfish – if you have a chance to save future generations, why not do it?

— Posted by *

Yes. For must of us, there is no way to know exactly how long one is going to live. All we know is that one day we will be dead. But for a few, a more precise prediction of the time of death can be made. Longer term decisions could now be made based on this fact.

— Posted by *

I am gene positive for Huntington’s disease as well. (I don’t know Katharine Moser, although I’d like to meet her.)Ten years ago, I was tested, and it has changed the trajectory of my life, for better and worse. I was sure that, in the future, everyone would have something to hide, to be ashamed of, in their genetic code. I am proud that Moser is so open about her life. However, the privacy that I have kept permits me to have a choice of insurance providers and employers.I don’t think she will have the same options. Even with the laws passed to guarantee non-discrimination based on genetics, did blacks get equality after 1865? Nope.

— Posted by *


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