1/ Hello, I have a story I've been working on for a long time—long before there was a pandemic, if you can believe it. It’s about the past and future of our children’s DNA.
2/ I went to Denmark, where prenatal screening for Down syndrome is near universal and only 18 children with Down syndrome were born in the entire country last year.
But, this isn’t only about Denmark or only about Down syndrome...
3/ This is a story about how genetics limits—but can also expand—what we consider “normal.”
4/ One of my most surprising moments reporting this story was when an IVF pioneer looked back on his career and said, “The concept of counting chromosomes as a definitive indicator of the truth—I think we’re going to look back on that and say, ‘Oh my God, we were so misguided.’ ”
5/ So why now? Prenatal testing isn't new of course.
I care when a biotechnology is available to one person, but I care more than it's available to millions. That’s when something shifts in society. Prenatal testing has changed our relationship with our unborn children.
6/ It’s also not just prenatal testing. It’s testing of embryos created through IVF. It’s sperm banks getting sued when their donors turn out to have “bad genes.”
7/ What I hope comes across is the emotional ground truth of parents navigating decisions about their children *today*
We’re not talking about a vague hypothetical future. The words “designer babies” never appear in this story.
8/ This piece wouldn't be possible without the dozens of people who shared their stories—those who have Down syndrome, who chose to have children w Down syndrome, who chose not to, who were never had an option. I couldn’t quote every person but I am tremendously grateful to all
9/ Most of all, I hope you spend some time getting to know people like Karl Emil.
(The photos in this story—aren’t they incredible?—are by Julia Sellmann)
10/ This isn’t a story about COVID-19 but of course COVID-19 was all around me when I was writing it. I keep thinking about this line from @edyong209: “The coronavirus found, exploited, and widened every inequity that the U.S. had to offer”
11/ Children with developmental disabilities have struggled with Zoom school. They are at increased risk for COVID-19, but the discussion of ventilator shortages has so often devalued the lives of people who are disabled
12/12 This story is comes out of my years of reporting on genetics. I’m interested in how we take DNA to be truth and why “in your DNA” is such a powerful metaphor.
But, when we meet the person behind a genome, they can surprise us.
Ever since the pandemic began, I've been haunted by stories of coronavirus patients dying alone.
I spoke to a palliative care team caring for these patients in a Boston ICU. They were often the last ones—the only ones—in the room when a patient died.
This small detail about the iPads for families to say goodbye to dying patients gutted me.
It's so hard to hold the plastic-wrapped iPad so that everything is in the camera frame. An intimate and sacred moment, made almost absurd by tech difficulties.
In 2016, I was writing about the return of flesh-eating screwworms in Florida, when I learned about a U.S. government program that sounded totally bonkers
Every week, planes drop millions of sterilized screwworms over the border of Panama and Colombia, creating a transcontinental "barrier" to the pests far, far away from the U.S.
Here's one of the planes getting loaded with chilled boxes of adult screwworms: