Put To The Test
When my children were born in the mid-1990s, new parents could already see that prenatal genetic testing was altering the terrain of pregnancy and childbirth. Growing numbers of educated women were having children at older ages, with resulting difficulties and risks. More and more parents faced challenging, deeply personal decisions about whether to engage in genetic testing and what to do if they received unfavorable results.
I remember my own anxieties when my wife, Veronica, took a blood test that searched for elevated alpha-fetoproteins, which are associated with diverse ailments ranging from spina bifida to anencephaly. The mere prospect of these rare conditions -- and even the choice to undergo the tests -- was surprisingly painful. At least genetic counselors and other professionals were available to help guide us.
... As Hank Greely, director of Stanford's Center for Law and the Biosciences, told The Washington Post, "Information is powerful, but misunderstood information can be powerfully bad."
As we identify new genetic markers associated with disease, and the immediate costs of screening drop precipitously, Greely's warning is increasingly relevant. It's often unclear why we should screen millions of newborns for genetic traits. Are we helping parents with their reproductive planning or just allaying their anxieties about a baby who somehow appears different? Are we helping children through early diagnosis and treatment or are we stigmatizing them and thus doing harm?