A gut-wrenching story in the New York Times this week details the difficult decisions of Amanda Baxley who, immediately after discovering she was a carrier of a gene which leads to Gerstmann-Straussler-Scheinker disease, vowed to never have children. Buxley learned that due to the genetic disease, one day between the ages of 30 and 50, without warning, she will begin to “stumble like a drunk,” dementia will set in soon afterward, and within five years she will be dead. Her father, aunt, and several cousins all died from the disease. The day after she found out, her boyfriend proposed.
The story has a bittersweet ending. By using in-vitro fertilization, Baxley and her husband were able to create several embryos, test them in a petri dish, and select ones that were not carriers of the deadly gene. Today they have three healthy children who are not carriers of the disease.
But as genetic testing of embryos becomes increasingly refined, more and more parents are opting for the procedure for a wide range of reasons, opening new ethical questions about “playing God” and deciding which embryos deserve to live.
The Times reports:
The in vitro fertilization and testing are expensive — typically about $20,000 — but they make it possible for couples to ensure that their children will not inherit a faulty gene and to avoid the difficult choice of whether to abort a pregnancy if testing of a fetus detects a genetic problem.
But the procedure also raises unsettling ethical questions that trouble advocates for the disabled and have left some doctors struggling with what they should tell their patients. When are prospective parents justified in discarding embryos? Is it acceptable, for example, for diseases like GSS, that develop in adulthood? What if a gene only increases the risk of a disease? And should people be able to use it to pick whether they have a boy or girl? A recent international survey found that 2 percent of more than 27,000 uses of preimplantation diagnosis were made to choose a child’s sex.
What would you do if you knew you carried a faulty gene which guaranteed you–and your carrier offspring–a slow and excruciating death? And to what extent is it ethical to hand pick our children’s genetic make-up? Let us know your thoughts in the comments below.
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