Ten years after Molly Nash became the first Fanconi anemia patient to survive following a controversial transplant, the ethical debate continues
In most ways, 16-year-old Molly Nash is a typical teenager. She argues with her parents. She bickers with her younger brother and sister (but admits to loving them, too). And she is a budding actress, recently portraying Chip the teacup in Beauty and the Beast.
The science that came together 10 years ago to give Molly these opportunities was revolutionary, controversial, and for her family, intensely personal.
“You never thought beyond milestones. Can we make it a month, six months, the first year?” recalls Molly’s mom, Lisa Nash. “Ten years ago we never would have imagined that we would ever reach this mark.”
At birth, Molly was diagnosed with Fanconi anemia (FA), a usually fatal genetic disease. Her only hope was a blood and marrow transplant. But survival rates for those without a matched sibling donor were a dismal 16 percent. And Molly had no siblings.
University of Minnesota pediatric hematologist/oncologist and umbilical cord blood transplant pioneer John E. Wagner, M.D., wanted better numbers. He worked with in vitro fertilization and preimplantation genetic diagnosis (PGD) experts to create better odds.
Ultimately, the Nashes would become the first to use PGD to have a child who was guaranteed to be free of FA and an exact blood match for a sibling.
“We knew this was going to be a hotly contested ethical issue. But we also knew that it was Molly’s best chance,” Wagner says.
In the spotlight
To start the process, Lisa Nash’s eggs were extracted and fertilized. Genetics specialists tested the resulting embryos to be sure they were disease-free and a match, and the selected embryos were implanted.
It doesn’t always work immediately—it took the Nashes five tries before a successful pregnancy. Adam was born on August 29, 2000, and Molly received his cord blood on what her family calls her “second birthday,” September 26, 2000.
“We recycled Adam’s cord blood—he didn’t need it anymore—and gave Molly life,” Lisa Nash says.
There were critics—vocal critics—who accused Wagner of playing God and manufacturing designer babies. Others took issue with selecting embryos for a trait such as blood match that was not of benefit for the resulting child. Through the firestorm of worldwide publicity, however, the overriding response was supportive.
The Nashes found the international attention overwhelming. “We weren’t doing it for the world’s approval or disapproval,” Lisa says. “We were flat out doing it for our family, so we could have a family.”
But it wasn’t a decision that the Nashes or their doctors took lightly. Wagner consulted with Jeffrey Kahn, Ph.D., M.P.H., director of the University’s Center for Bioethics.
“We made a conscious effort to be public and discuss this in a transparent way,” Kahn says.
A lesson in living
Ten years later, the ethical debate continues. Many embryos are created to get one perfect genetic match for patients in need of a transplant. Alternatively, before preimplantation genetic screening was an option, some families chose to abort healthy but non-matched fetuses, Kahn says.
From a scientific perspective, much has changed. “This technology is now being used for many different diseases, and many places offer it,” Wagner says. “While the debates continue, we use these technologies for good.”
And the FA survival rates are vastly improved—about 90 percent for transplants involving unrelated donors and 100 percent when the donor is a matched sibling.
Meanwhile, Molly Nash, who will always be a “first,” goes about her typical life.
“Molly’s taught us to live life,” Lisa Nash says. “To this day we live life to the fullest because we still have no idea how long we will have her on this earth, so we make every second special.”
By Sara E. Martin