I strongly believe each family needs to decide what is right for them about tell/ no tell.
I read a post when we were just considering DE and it really helped my decision making around this issue.
The poster wrote that medical science being what it is, genetic testing is more common these days, and is only going to increase in future. People will get genetic testing for all sorts of issues in the future. I know a close friend of mine has just had genetic testing for a family illness that they didn't even know existed until last year - they just watched family members die young without knowing why. Genetic testing will become quite common. And life expectancy is increasing. I believe by the time our children are born, their life expectancy is considered around 100 years. That's a lot of years of medical science and possible testing - things that our minds can't even conjure up yet. Probably home testing and testing for a wide variety of things.
For us, the thought of our child 'discovering' through genetic testing was too great a risk. This is why for us, we went with the adoption model of 'tell'. I'm going to share with our children the information about epigenetics, and the contribution the BIOLOGICAL (as separate from genetic) mother makes to formation of the child in the womb.
Best of luck for all us girls doing DE!
EliB
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