I had a zoom meeting today with my younger onset alzheimer’s group. I find these catch ups so useful but they are also incredibly confronting.
Today we sat as a group and listened to Patrick who has a huge decision to make. He needs to choose whether he gets a genetic test done. The results of this test have the potential to change his children’s lives forever. If his test comes back positive then both his children will develop dementia - he has a 50/50 chance. It’s a HUGE a call and we all put in our two cents worth.
For me the real question is this - just because we can know something - should we open that door in the first place?
The guilt that comes with passing along genetic material seems to grow with each passing year. We are only going to get better at this and so more and more “genes” are about to be isolated and explored further. Where do we stop and who chooses?
About twenty years ago my cousin decided to put her medical info on the NZ familial gastrointestinal cancer registry and contacted the rest of us to see if we were interested in doing the same. I agreed happily and got a call a few weeks later from a genetic counsellor. They had looked at all the family history and I was the one they were interested in. I had finally been chosen first, but not in the way I imagined.
They got me to come in and meet with them before anything else happened. They explained they were concerned I potentially could have a newly discovered gene and they wanted to check me for two potential conditions. We decided to get the most expensive genetic test done first and we all felt great about that decision because the odds of me having MAP were incredibly rare. Of course, that’s the one I have - I love to be dramatic!
This testing literally saved my life. I had a colectomy in 2013 and without that operation I would most certainly have developed bowel cancer at some point and the kind I would have developed would have travelled everywhere.
I do not blame my mum and dad for these bum genes, we already knew there was a bowel sensitivity on my mum’s side of the family so it was no surprise. However, my dad’s side of the family were all good as far as we knew and so that was the huge revelation we didn’t see coming.
The question for today is this - would I have wanted to know when I was a child that I had MAP? I keep coming back to no.
I believe my family would have treated me differently if they knew I had a time ticking bomb for a bowel. I would have treated myself differently and thought about myself differently. I spent most of my childhood convinced I could do anything I put my mind to, would I have felt that if I knew about my condition?
Adult Rachel was equipped to deal with this information in a way I don’t think child Rachel was. Genetic testing is not going to slow down, it’s only going to speed up. We will be routinely genetically testing our children in the future and so these issues will be picked up much earlier. Do parents and children want to know what comes next? Are we ready to know … everything?
I have been saved by this genetic knowledge and yet I still have questions about the knowing part of it all. Is it good to know or is being an ostrich a much overlooked but brilliant concept?
Patrick is still weighing up his options. His genetic counsellor has advised him that if he gets the test then of course he must tell his children regardless of the outcome. It’s such a life altering choice and one that is new to us as humans. It’s almost like prophecy - we can tell you ahead of time what is going to happen to you. It’s a huge responsibility and my question boils down to this one thought - is this knowledge and responsibility a good thing or not?
I’m not expecting answers because I clearly see both sides. Some people would get this kind of news and see it as a positive thing. They would travel more, work less and treasure each moment. On the other hand, it could also spiral you into deep depression. What’s the point, I know I’m going to die and now I know how. It’s like all choices - it comes with two sides.
We all have a limited amount of time on planet earth and I think the bottom line is to live your life the best way you can and then … wait to see what happens next.