Dying To Have A Family

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Children are the hands by which we take hold of heaven, Henry Ward Beecher once observed, which may be as good an explanation as any for why a woman facing death would go to any length to bear a child. And what greater gift could she give than the gift of a healthy life--even if she might not be there to share it?

That was the question on the table last week with news of the birth of the first baby ever bred to avoid the risk of early-onset Alzheimer's disease. There may be only a dozen families in the world that carry this particular gene mutation, which causes dementia and death, often by age 45. One 33-year-old woman knew all too well what the disease does to a brain--and a family. Her father died at 42; her sister began declining at 38 and within five years needed full-time care; and her brother's memory began to crack at 35. A professional geneticist, the woman also knew what it would take for her and her husband to have a healthy child. By prescreening her eggs for the defective gene, doctors were able to insert only healthy embryos during in-vitro fertilization. Last week the Journal of the American Medical Association reported that the woman gave birth a year and a half ago to a girl who was spared the family curse. The child, however, almost certainly will not be spared the experience of watching her mother fade away and die, probably before the girl is 10 years old.

The case was more an ethical than a scientific landmark. There was the familiar slippery-slope question that arises with all genetic tinkering: Today we screen for deadly genes, tomorrow for baldness and tone deafness? But last week's case had a whole other layer of tragedy and quandary. Is it fair for a woman to give birth who will probably "not be able to care for or even recognize her child in a few years?" asked an editorial in J.A.M.A. In the arguments over life and choice, the right to have a baby is implicitly absolute. Saul Bellow's virility is celebrated when he becomes a father at 84, as is Larry King's when he has a baby at 65, months after angioplasty. Does a shortened life expectancy make a woman more unfit for motherhood?

The mother's children--she is reportedly pregnant again, this time with twins--are likely to be raised by a single parent. But this is true for 1 in 4 children, and it has become an accepted medical practice to help widows become pregnant through artificial insemination with the late husband's sperm. Those who feel that having a baby is a basic human right argue that this couple behaved in an especially ethical way by going to such effort and expense to ensure that their children would be born free of the disease. In this sense the case is comparable to that of a woman with cancer who forgoes chemotherapy in the hope of having a healthy baby, knowing that her own life may be shortened in the process.

Those who focus as much on responsibilities as on rights note that "when people adopt children, the agencies that help them must think about the well-being of the child," says Erik Parens, a research associate at the Hastings Center--and that includes the couple's capacity to function as parents. It would be hard for a woman with such a medical history to adopt. But the reproduction business is virtually unregulated and profit driven, with the ethics improvised at best. "There is a need for general oversight," argues Parens, "instead of the free-for-all we now have."