The Decision

Yesterday a dear friend of mine discovered via genetic testing that he does NOT have the gene for a rare disorder that runs in his family. He and his family participated in some clinical studies down in California to help researchers find a cure. As part of the study, he and his wife fought for the right to know if he had the gene or not. He had a 50-50 chance of having the faulty gene. IF he did not have it, there is no chance that he could develop it at a later date, he was 100% safe. If he DID have the faulty gene, there was 100% chance that it would turn into the full blown disease. There was no in-between. The gene always turns on if you have it. If he had the gene, this disease WOULD be a part of his life.

While we have all waited for the results to come in, I’ve given a lot of thought to whether or not I would want to find out. The doctors and nurses tried their best to convince him NOT to find out. There is no cure. Finding out that he had this gene would be agonizing, as they spent the rest of their lives waiting for the day, the moment when it would turn on and turn into disease. It also would mean that they would have the chance to prepare, to push for more research, to get involved in studies, to live each day to the absolute fullest, never knowing when beautiful moments would be taken from them. On the other hand, finding out that he did not have it would bring a relief that I can’t fully comprehend. There would be no waiting for the other shoe to drop. It would mean no wasted energy and worry for a lifetime about something that was never, ever going to happen.

What about you? Would you find out your test results? Would you want to know if this disease was going to be a part of your future? Would you long for the incomprehensible sweet relief that would come with knowing that you weren’t going to be affected by this disease? Or, would you rather never know, either way? Would you rather let fate dole out life and death as it will do anyway?

What would you do?

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Kriste Colley

Kriste Colley

Kriste has degrees in counseling and child development and still has no clue when it comes to her own two children. She is sarcastic, thinks she's funny, and her house frequently looks like it's been robbed. She is currently a stay at home mom in Kennewick, Washington.

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  • Becca Lingley

    I’d want to know, I think, if I was in his position and had a family history of something. I don’t really like surprises, and I love the opportunity to plan ahead whenever possible. I’m not interesting in going looking for things that aren’t historically in my family to see if I might possibly suffer from something in the future, though.

  • Suzy Garza Higley

    I wouldn’t want to know. I would constantly think about it and not enjoy each present day. No one knows the fate of our life anyway. He could be 100% on that front, but other things can happen. Life is not certain. …and there is never enough preparation. No. I’m pretty positive about that. Great one Kriste!!!

  • Kriste Colley

    Thanks for the thoughts, Becca. Not only does this disease run in his family, it has a very, very strong incidence, and if he had the gene it would 100% turn on and affect his brain functioning at a young age. I agree with you, though, there is no reason to go digging around at things that aren’t a direct and strong possibility.

  • Kriste Colley

    I think his is the best case scenario. Of course I would want to know if the results turned out to be negative, to have that relief, that burden off of my shoulders. If the results swung in the other direction, well, that’s when it gets evil and tricky for me.