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Passing on genetic illness

220px-Autosomal_dominant_-_en.svgIn the following post at Patheos the author reflects on the fact that her teenage daughter inherited her genetic condition, a predisposition toward very fragile bones, Can You Regret Having a Child Who Inherits Your Genetic Baggage?:

I want to be perfectly clear, though, about what I don’t mean. I hate those clichés about how we should be grateful for the shitty stuff in our life because it teaches us so much, about how “Everything happens for a reason.” I don’t believe that one bit.

But I’m beginning to understand that Leah’s inheritance from me is not merely a faulty gene and a fragile skeleton, but also the truest kind of compassion—the kind that arises when you know what pain looks like and feels like, and you recognize another’s need, and know just what to do.

Do I regret that Leah inherited my fragile bones? I don’t love it. I even sometimes hate it.

But while I sometimes wish I could have spared her that particular genetic fate, I’m also profoundly grateful that it was not in my power to decide what kind of kid I would get.

Because I never could have predicted, much less devised, the wounded and gracious person my daughter is becoming.

I appreciate that the author disavowed the clichés whereby parents of children with disabilities or illness reflect upon what a learning experience it was or is. But with preimplantation genetic diagnosis The author could indeed have predicted the outcome today, as opposed to 15 years ago. What would her choice be now? I suspect she would choose to implant only those zygotes which lack the mutation (it seems that it is an autosomal dominant). These are discussions we as a society need to have, and my hope is that the two sides avoid clichés and don’t attempt to shout the other side down. I doubt we’ll be doing much PGD for blue eyes or height, but lots of these sorts of congenital illnesses which are due to major deleterious mutations are going to disappear. Switching to normative mode, and the world will be a better place with less suffering

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