Searing, intense, personal account of being mother to a child with Tay-Sachs, perhaps the archetypal disease used for discussing wrongful life. Emily Rapp’s take on prenatal testing is the opposite of abstract. Read it all:
That it is possible to hold this paradox as part of my daily reality points to the reductive and narrow-minded nature of Rick Santorum’s assertions that prenatal testing increases the number of abortions (a this equals that equation), and for this reason, the moral viability or inherent value of these tests should be questioned. Prenatal testing provides information, a value-less act. I maintain that it is a woman’s right to choose what to do with the information that attaches value and meaning, and that this choice is—and must be—directly related to that individual’s experiences. What’s at stake here is not the issue of testing, but the issue of choice. I love Ronan, and I believe it would have been an act of love to abort him, knowing that his life would be primarily one of intense suffering, knowing that his neurologically devastated brain made true quality of life—relationships, thoughts, pleasant physical experiences—impossible.
Here’s another set of truths for the moral and ethical mix: I was born with a physical deformity in the age before the evolution of advanced ultrasound technology that may have detected it. My mom did not have a choice about terminating her pregnancy, although when I was born and she was told that I might be retarded, that I might never walk, and that given these possibilities she might want to consider institutionalizing me, she probably wished she’d had the choice. Regardless of what she may or may not have decided had she been possessed of all the information prior to my birth, regardless of the fact that none of the doctor’s warnings had any truth to them, it would have been her choice to make.
Choice. The center of ethics.
Bioethics is controversial.
No one endorses the ideas or concepts explored here, not even me.
You will develop a strong opinion about something you find here. I want to hear it. Philosophy is a conversation.
popbioethics [at] gmail [dot] com
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