Miraculous advances in gene editing are now making it possible to cure patients suffering from devastating heritable diseases. Soon, parents may even be able to edit the genomes of their unborn children, preventing certain conditions before they ever appear. We are looking forward to seeing you tonight in Pittsburgh to debate the profound questions about the dignity of all human beings and the ethics of tweaking our children’s genetic codes. For those who cannot join, keep your eyes peeled for a video recording of the debate, available to subscribers only.
For Alana Newhouse, these questions are not abstract. In March 2022, her son Elijah was diagnosed with Angelman syndrome, a rare genetic disorder that makes simple tasks most of us take for granted, like walking and talking, daily struggles for him. A woman of faith, she had to reconcile her belief in God with the idea of altering her son’s DNA. Below is her story. —The Editors
I am, by temperament as well as profession, an editor. I can certainly string together a sentence, but what I love to do, and what I’m best at, is helping writers ensure that the products of their own creative impulses are the most beautiful, clear, strong versions they can be.
The two roles are not interchangeable. In fact, they’re fundamentally different, emotionally and practically: Writers are saddled with the responsibility of making something entirely new, which, when done right, requires inspiration, grit, and a tolerance for the time and energy it takes to manifest something that never existed before. Editors, by contrast, examine someone else’s creations; consider the world they’re about to be introduced into; and then make tweaks in order to generate the strongest and most impactful creative work. In general, these are two different personality types, and they exhibit different varieties of ambition. Writers get their names splashed across the page, along with whatever adoration or fame comes along with it; editors get to make crucial decisions about the final shape that product takes, including the placement, headlines, art, and more. Or, as the old newspaper adage goes: “Writers get the glory, editors get the power.”
