Designer babies

By Erica Stanley

Advanced genetic technologies are giving would-be parents new hope, but also hard choices. What technologies currently exist to test embryos for genetic disorders or predispositions? What legal standards regulate such technologies, and what ethical ones should do so?

Many believe that parents should be allowed to select embryos to avoid passing along devastating genetic diseases, but should they be allowed to select their child's gender, eye color, musical or athletic ability? Or will these choices erode our respect for diversity and take us further down the slippery slope to eugenics?

These and other questions sparked lively discussion at the sixth annual public symposium, "Babies by Design: Redefining Humans?," presented by the UCLA Center for Society and Genetics on Jan. 27 at Covel Commons. The symposium focused on the use of a technology called Preimplantation Genetic Diagnosis (PGD), which analyzes one cell from an eight-cell embryo to determine its genetic makeup before the embryo is implanted for full-term pregnancy.

Currently, PGD can be used for sex selection, preventing the transmittance of single-gene inherited diseases and tissue matching. Some believe that PGD may someday allow parents to select children with specific non-medical traits, such as eye color, intelligence and athletic ability.

The medical promise of PGD became a reality to Lisa Nash, a neonatal nurse who was a speaker at the symposium. She and her husband Jack, who also served on a panel, became parents to Molly, born July 1994. Their joy, however, was cut short when they learned that their daughter was born with several severe abnormalities, as a result of a very rare and devastating genetic disease called Fanconi Anemia (FA). It leads to bone failure and often results in the development of leukemia or other forms of cancer.

Since the most successful form of treatment is a bone marrow transplant, the Nashes immediately went in search of a tissue match for Molly. But after multiple bone marrow drives, they were left empty-handed. With Molly becoming sicker by the week, the Nashes made one more desperate attempt to save their dying daughter.

At this point, PGD had only been used to select embryos that did not contain a genetic mutation for a specific genetic disease. But Lisa, with her background in neonatology, suggested that they use PGD not only to select an embryo that would be free of the genetic mutation that causes FA, but to also provide a tissue match for Molly. After creating several embryos through in-vitro fertilization, an embryologist examined them to find the right match.

In August 2000, Adam Nash was born free of FA and a tissue match for his sister. His umbilical cord blood was used for his sister Molly's bone marrow transplant.

While most people, when discussing PGD, do not have a problem with using it to avoid transmitting a genetic disease, the idea of creating a "sibling donor" has caused controversy.

Most children with FA do not live beyond 7 years of age, but today Molly is a thriving 13-year-old. As Lisa Nash put it, "She complains. ... She's like every other kid her age, and I couldn't be happier."

Edward McCabe, co-director of the UCLA Center for Society and Genetics and physician-in-chief of the Mattel Children's Hospital, along with UCLA faculty Judith Daar of the School of Law and Wayne Grody of the David Geffen School of Medicine, led discussions on the scientific, legal and ethical issues surrounding the use of PGD and other reproductive technologies. Also participating was Paul Miller, director of the University of Washington's Disabilities Studies Program.