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To Build A Baby
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The technique has attracted controversy in the United States simply because it involves embryos. In 1997 Hughes was accused of using federal funds for embryo work. He lost his funding from the National Institutes of Health and resigned from Georgetown University in Washington, D.C. (Hughes had initially taken up Molly Nash's case, but was forced to abandon it. The Nashes eventually found a doctor in Chicago who performed the procedure.) Hughes moved to Detroit and set up the Center for Molecular Medicine and Genetics at Wayne State University.
The more substantial issue, though, is the specter of eugenics. At least one clinic in the United States is currently offering PGD services that allow parents to select the gender of their child, and more will surely follow. Hughes doesn't condone the practice. "We won't do gender selection," he says. "Gender is not a disease." What about fixing traits that make a good sibling donor? Are Hughes and other PGD specialists unwittingly turning children like Adam, selected to provide a transplant for his sister, into commodities? Hughes has struggled with this question and, he admits, has never managed to answer it unequivocally. He first confronted it when a case came up, before Molly Nash, while he was still working for the NIH in Washington. "I was very worried about it," he says. "We had meetings. We published in a serious bioethics journal." Hughes is not the kind of person who finds it easy to say no, and it's not hard to imagine him taking pains to avoid the impatient parents. One day the husband tracked him down at his lab unannounced. "I'll never forget what he told me," says Hughes. "He says, 'While you're running around the world sitting at mahogany tables debating the bioethics of this, our daughter is dying.
" 'People have children for all kinds of reasons'," Hughes says, still paraphrasing. " 'They have them for money, they have them for power, they have them to work on the farm. Mostly they have them by accident. What's wrong with our having a child we're going to love very much, but who also has the miraculous power to save our other child's life?'" It's not an easy question to answer.
© 2003
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