Denny was born with HLHS. That's an acronym for hypoplastic left heart syndrome. Hypoplastic left heart syndrome is universally fatal, if left untreated. Even now, there are babies that do not survive, even with full-lenght clone DNA therapy administered in-utero.Amy Sterling Casil's "Perfect Strangers" is a touching story of a father and his genetically engineered son. Her preface notes that the story was inspired by her own experience, which makes it all the more moving for me:
When at five months of pregnancy, Carolyn went for a high-level ultrasound that determined Denny had HLHS, it seemed like the most natural thing in the world to try gene therapy. The doctors explained how the heart healed itself as the baby grew.
~ "Perfect Strangers", Amy Sterling Casil
My son Anthony died in 2005. He was born with Down Syndrome. I began thinking about what this story became when the genetic counselor discussed chromosomal abnormalities with me, saying that a cure for them was a long way off, but other genetic illnesses would soon be cured. Every therapy mentioned in the story is currently being developed. The story is fiction; the feelings are real.While the technology is certainly being discussed and developed, I don't think we are anywhere near to routine human genetic engineering. It's not just that there are technical difficulties (and there are), but serious ethical concerns. Take, for example, this week's report of the first genetically modified human embryo. The scientists didn't attempt to make any changes to human genes; instead they inserted DNA that encodes a fluorescent protein allowing the modified cells could be tracked. The embryo that was used was abnormal and nonviable, and was never intended to implanted or even develop beyond five days. Even so, there research provoked intense debate and discussion. I do believe that genetic engineering technology will eventually improve to the point that it can be used safely in humans, but the ethical concerns that arise from the technology will be harder to overcome.
"Perfect Strangers" was originally published in the September 2006 issue of Fantasy & Science Fiction. You can read it free online (pdf).
Tags:science fiction, genetic engineering
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There will be ethical concerns but, largely, those concerns will be hashed out long before genetic engineering becomes a day to day reality.
ReplyDeleteFrom in utero testing for genetic disorders to sanctity of life questions to issues of resource allocation, most of the ethics involved will be decided as the technology slowly gains viability.