Genomic Messages by George Annas

Author:George Annas
Language: eng
Format: epub
Publisher: HarperCollins
Published: 2015-04-23T04:00:00+00:00

Newborn Screening

Produced almost two decades ago, the movie Gattaca still captures the uneasiness we all feel about genes in terms of destiny, discrimination, and eugenics. In Gattaca, parents using IVF and preimplantation manipulation can choose at least some of the genetic makeup of their children. To ensure that a “valid” offspring is produced, embryos are weeded out in the laboratory if they are found to have a “critical predisposition to any major inheritable disease.” There are “potentially prejudicial conditions,” such as premature baldness, myopia, alcoholism, addictive susceptibility, and propensity for violence or obesity, that can be modified at the embryo level. Those who are conceived naturally are considered “invalid.” In Gattaca, they are described as having “discrimination down to a science.”

Vincent Freeman is “invalid,” his parents having “put their faith in God’s hands rather than those of the local geneticist.” Immediately after his birth, a nurse pricks his heel. A drop of blood is inserted into an analyzing machine that prints out the baby’s health future. Antonio, his father, asks, “What’s wrong?” Vincent’s voice-over continues: “Of course, there was nothing wrong with me. Not so long ago I would have been considered a perfectly healthy, normal baby. Ten fingers, ten toes. That was all that used to matter. . . . [Now] only minutes old, the date and cause of my death was already known.” Vincent’s newborn test results are read out loud by the nurse in the delivery room: “Manic depression, 42% probability; attention deficit disorder, 89% probability; heart disorder, 99% probability; life expectancy, 33 years.”

Is Gattaca-like newborn screening in our future? Should it be? We begin with a true story about a newborn named Kimberly. Christina and Robert couldn’t have been happier. The nurse had just come into Christina’s hospital room with their new daughter, Kimberly, who had been taken to the nursery for her discharge examination. Christina noticed that Kimberly had a small adhesive bandage on her right heel and asked the nurse about it. The nurse explained that a few drops of blood had been taken from Kimberly for newborn screening for a number of rare diseases, and that it was done because “it’s the law.”

We have now left the realm of medical practice and entered into the realm of public health—where decisions are made by state governments to protect populations rather than individuals. In the context of genetics, we seem to be in the process of abandoning personalized medicine before it has even been introduced into the clinic, skipping directly to population health. This is certainly true of newborn screening, even though routine screening of newborns has had little impact on health at the population level. There are three things Christina and Robert (and all new parents) should know for sure. First, thousands of babies in the United States (out of millions) will have a very rare condition that could be detected (and hopefully treated) by newborn screening. Second, the chance of any individual baby having one of them is vanishingly small. Third, new screening

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