Any mother or father who has tended a sick child has felt the powerful desire to comfort and heal. For even the most mundane of illnesses, parents miss work, go to pediatrician appointments and lose sleep. When the diseases are more serious, the efforts become more intense. To what lengths should parents go to help their children?
That’s the question that drove Newsday’s series “The Match” this week. Reporter Beth Whitehouse followed Steve and Stacy Trebing as they sought a cure for their daughter, Katie, who was born with a rare and fatal blood disease. They chose to use in vitro fertilization to have another baby, who became a bone marrow donor for his older sister.
Medical science is offering options to families like the Trebings that were unimaginable just a short while ago. Preimplantation genetic diagnosis allows parents to screen the numerous embryos usually created by IVF to see if they carry inherited diseases. It also enables geneticists to identify those that would provide sibling matches for life-saving bone marrow transplants. But since only matching embryos are given the chance to develop further and be born, the techniques shoulder a tremendous ethical weight: Embryos with no flaws, just a different bone marrow profile, are discarded.
These embryos are not children – even under ideal circumstances, only a percentage of them would trigger pregnancies, and a somewhat smaller number would go on to become babies – but they do represent the potential for children. So, for that matter, do the hundreds of thousands of frozen embryos currently stored in U.S. fertility clinics. Destroying – or allowing to remain frozen indefinitely – otherwise healthy embryos is a practice that is abhorrent to some.
And the concept of making a new life to serve an existing one is its own ethical minefield. An estimated 200 donor children have been born worldwide. What physical effects have they suffered? As they grow up, what psychological impacts will their amazing creation stories have on them? There is currently no way to follow up and address such questions.
The reproductive technology industry remains unregulated in the United States, and cases like the Trebings’ tend to bring out slippery-slope fears. If embryos can be selected to match a sibling’s bone marrow, why not screen for eye color or height? In his beautifully written and deeply unsettling novel “Never Let Me Go,” Kazuo Ishiguro imagines a Great Britain in which clones are created and reared so that their organs can be harvested when they reach adulthood.
We have the technology, and the threshold has been crossed. Now we must have the debate.
Article here.
