WASHINGTON — Years before he was elected to Congress, Jeff Fortenberry and his wife, Celeste, welcomed their third baby daughter to the world.
And then they received the terrible news — Kathryn had been born with multiple heart defects.
Fortenberry recalled being overwhelmed by all the medical information suddenly coming their way.
He scoured the latest scientific literature for treatments, including the potential use of adult stem cells to grow a new aorta for her.
“What parent wouldn’t search the world over for a cure for their child?” Fortenberry said as he recounted the story Tuesday to other members of the House Appropriations Committee.
The Lincoln lawmaker decided to share that story as the panel wrestled with whether to preserve restrictions on human gene editing research.
The committee was considering its annual agriculture spending bill, legislation that covers funding for rural development, conservation and a host of other areas — but also funding for the Food and Drug Administration.
Fortenberry, the top Republican on the agriculture appropriations subcommittee, favors keeping the restrictions on gene editing research.
The stem cell research Fortenberry had read about turned out to be premature. Instead, Kathryn received a dozen surgeries over the years and now has multiple mechanical devices in her heart.
As a result of those advanced treatments, though, she has the possibility of living a full, normal life. If she’d been born two decades earlier, she would have had a significantly shortened life expectancy, Fortenberry said.
Today she’s in college, a standout student who will be turning 19 this summer.
He brought up his daughter’s experience as evidence that life-saving medical innovation can be possible while also guarding against unintended consequences and ethical dilemmas. He also talked about the danger of diverting resources to treatments that aren’t viable.
For the past few years the agriculture spending bill has included language barring the FDA from considering clinical trials “in which a human embryo is intentionally created or modified to include a heritable genetic modification.”
Democrats dropped the language from an earlier version of this year’s bill, in part to spark discussion about it.
Those who favor the restrictions point to cases such as the Chinese scientist who announced last year he had created genetically modified twin babies. And now there is evidence the twins may face a shorter life span as a result.
But others say the prohibition was slipped into law from the start without any debate and that it ties the FDA’s hands inappropriately by not allowing the agency to review specific circumstances of individual proposals.
Some therapies prohibited by the language could actually be researched ethically, they argue.
After listening to Fortenberry, Rep. Debbie Wasserman Schultz, D-Fla., shared her own emotional story of being diagnosed with breast cancer.
She discovered that she had an inherited gene mutation that carries a higher risk of breast and other forms of cancer. She spoke of how her own children will have to be tested for that gene when they are older.
And she talked about the possibility that science will advance to a point where they could have the offending mutation — and the corresponding potential for sickness and death — eliminated from the family tree.
“That’s incredibly important,” she said. “This is not ‘2001: A Space Odyssey,’ or ‘1984’ or a mad scientist playing games with genetic material. There are real opportunities … to try to cut off the passing on of genetic mutations that can have dramatic, life-altering implications.”
Over Schultz’s opposition, the prohibition was restored on a voice vote and the committee then voted to advance the overall spending bill.
The committee chair Rep. Nita Lowey, D-N.Y., sided with Fortenberry in supporting the restrictions but said she did so reluctantly and stressed that Congress needs to thoroughly examine the merits of the research.
“While some may feel a moral obligation to oppose this research, others of us feel that we have a moral obligation to allow advances in science so fewer parents will have to watch a child die of a heritable disorder and to help eradicate terrible, deadly diseases that can be passed down from generation to generation,” Lowey said.
In an interview later, Fortenberry reiterated that science has to be tied to ethical considerations and that lifting the prohibitions would send a signal to maverick researchers that the restraints are off, a move that would endanger everyone.
He also spoke about how proud he is of his daughter and reflected on sharing such a personal story with his colleagues.
“When you have a child, it’s like watching your own heart walk outside your own body,” Fortenberry said.