A reader adds her story to the thread:
My daughter is a carrier of an X-linked metabolic disorder, Adrenoleukodystrophy. It’s quite rare, thus receiving little attention and has no treatment or cure, but it’s best known for the movie it inspired, Lorenzo’s Oil. I know my daughter is a carrier only because her father died at age 32 after having been diagnosed three years earlier. Normally, this genetic glitch isn’t considered life-threatening if a young male makes it out of his childhood and teens, but my late husband had the misfortune of being one of the unlucky adult males who’s brain is literally stripped of its protective coating and eventually dies.
Had we known about his status when our daughter was conceived – via IVF just two years earlier – we would have certainly screened for it, and this would have meant gender selection, because being X-linked, a son couldn’t possibly have inherited the bad gene. Only my late husband’s daughters would inherit the tainted X because he had only one to give.
Someday, I will have to tell my daughter that she is the carrier of a potentially deadly disease that could kill any son she might have, and which carries the added indignity of disability for her because 20% of female carriers experience dorsal nerve damage and a very unlucky few will have brain involvement leading to dementia.
As much as I love her, I would never have given birth to her if I had known. People talk about playing God but isn’t bringing a child into the world with a known disability or potentially fatal illness playing God too?