from The New York Times Magazine
March 31, 1991
note: this is only the first page or so of a 7-page article

Dr. Anderson’s Gene Machine

The advent of genetic engineering raises many prickly questions, few practical answers. This week, a pioneer in the field plans to present one case of gene therapy that has "worked."

By Robin Marantz Henig

"How are you doing, kid?" the doctor asks his young patient, hugging and tickling her and trying to make her giggle. The girl looks up at him with huge dark eyes, but since a stranger is in the room today she is too shy to smile. She is a quiet 4-year-old whose solemn gaze can be a bit unnerving. As she drinks chocolate milk and zaps the hospital television with the remote-control device, she seems oblivious to the fact that she is making medical history.

It’s a bright blue day, and the child is back at the National Institutes of Health in Bethesda, Md., for another monthly infusion of genetically engineered blood cells. She has adenosine deaminase (ADA) deficiency, a rare inherited condition that makes her unable to manufacture ADA, an enzyme crucial to the immune system. Without ADA, she is as vulnerable to infection as a person with AIDS.

The Band-Aid on her left hand is the only sign that the child, whose family has requested anonymity, is going through any medical procedure at all, much less a trailblazing one. But the doctor hugging her is acutely aware of the significance of every small gesture. Infusing this little girl with the genes she is missing has made the physician, Dr. W. French Anderson, 54, one of the world’s first genetic surgeons.

This Thursday, if all goes as planned, the child will be back in Bethesda for her sixth transfusion of genetically engineered cells. The following day, Anderson will give an update of her status before the Human Gene Therapy Subcommittee at the National Institutes of Health, the official Government body that oversees his research. After months of guarded optimism, the physicians caring for her are finally ready to claim the child has been helped. Anderson, chief of molecular hematology at the National Heart, Lung and Blood Institute, will announce that "gene therapy has worked."

. . . As the nation’s leading genetic surgeon, Anderson has been called upon to address many of the fears and uncertainties that surround this brave new technology. Did he rush ahead too early with an experiment before it was fit for humans, just so he could say he did it first? Did he start with the wrong patient, since a less extreme drug therapy for the child’s condition already exists? Is he heading us down a slippery slope toward a new era of eugenics, when scientists try to manipulate genes to create a disease-free Master Race?

Anderson answers questions like these with a strained patience. "Of equal importance to having the scientific community accept gene therapy," he says, "is having the public accept it." Like any visionary with a radical new idea, Anderson has applied mule-headed determination to force a sluggish society into its rendezvous with the future. But in a field as technical as genetics, a self-professed zealot like Anderson is not simply a catalyst for change. He is also called upon to summarize for the rest of us its potential benefits and risks.

It’s not an easy role. Try as he might to explain gene therapy dispassionately to the people who must judge him now – his peers reviewing his proposals, the politicians considering laws to restrict genetic tinkering, the patients on whom he wants to experiment – Anderson’s bias is obvious; he can barely conceal his enthusiasm. When he talks about human gene therapy, the trim, silver-haired scientist in the white lab coat starts bubbling over like a little boy.