Ethics, Eggs and Embryos
Newsweek, By Claudia Kalb
Kim Barnett would do anything to help her dad. Already, she’s changed careers. That move came after Barnett noticed her father, who has Parkinson’s, drooling on an airplane in 2001. The disease had hijacked his instinct to swallow—and it devastated Barnett, who worried that outsiders would notice only the symptom, not the smart, funny man she loved. Within two years Barnett had given up her job as an educational consultant to head up the Parkinson Association of the Rockies. Today she says she’d do something far more personal to battle the disease: she’d donate her own biological eggs to stem-cell research. “It’s important to keep the advances going,” says Barnett, 35. “I’m a blood donor and an organ donor. I don’t see donating eggs as anything different.”
For months, politicians have been battling over the ethics of using embryos stored in fertility clinics for stem-cell research. But scientists aren’t setting their sights on embryos alone—they want eggs, too. The purpose: somatic cell nuclear transfer (SCNT), a complex technique that merges eggs (whose nuclei have been removed) with adult cells to create specialized embryonic-stem-cell lines. Last month South Korean researchers announced they’d nailed SCNT, also known as therapeutic cloning, with the help of 18 egg donors; now U.S. scientists want to get going, too. They believe SCNT will allow them to study the origins of disease, hunt for cures and create genetically matched repair cells for patients. Soon, women like Barnett could become biological pioneers in the next frontier of stem-cell science.
Egg donation has its roots in fertility medicine, where the practice has exploded. In 1996, donor eggs were used in just over 5,000 in vitro fertilization (IVF) cycles; by 2002, that number had almost tripled to 13,183. Donating eggs for babymaking is one thing. A woman submitting to weeks of hormone shots, blood work and, ultimately, surgical egg retrieval for a science that has no known benefit to the donor, a family member, or anyone else raises a host of thorny questions: Is the procedure safe? Should donors be paid? Are women being co-opted? Richard Doerflinger, of the United States Conference of Catholic Bishops, calls therapeutic cloning “a new evil” on moral grounds. But one of the most outspoken critics is Judy Norsigian, coauthor of the newly revised “Our Bodies, Ourselves,” the health bible for generations of women. Norsigian supports embryonic-stem-cell research, but says SCNT is too premature to warrant exposing women to fertility drugs: “The risks to would-be egg donors are not worth the hypothetical benefits.”
Egg donation is not 100 percent safe. The most worrisome immediate complication is ovarian hyperstimulation syndrome, which affects anywhere from 2 to 5 percent of women. Rachael Marchand, 24, had a severe case. Last year, after producing 22 eggs for an infertile couple, Marchand was hospitalized, her abdomen swollen with 30 pounds of excess fluid. Marchand blames a California fertility clinic for rushing her through the procedure. Dr. Brian Berger, head of egg donation at Boston IVF, says that danger can be dramatically reduced by adjusting medications. “We watch our donors very carefully and guard against it,” he says. At Boston IVF, which is planning to recruit egg donors for therapeutic research in collaboration with Harvard scientists, prospective donors must attend a lengthy seminar, where they get a 20-page booklet detailing the procedure and potential complications.
Many IVF egg donors are driven by altruism—but they’re also motivated by money. The American Society for Reproductive Medicine says women should be compensated no more than $5,000 for their time and effort, but many agencies pay more, and some donors have earned well over $20,000. As controversy over cost simmers in the fertility universe, ethicists are weighing in on scientific donors, too. In April, the National Academies published guidelines stating that egg donors for research should not be paid. “We don’t want donors to be turned into vendors,” says committee co-chair Jonathan Moreno. Harvard stem-cell scientist Doug Melton, who has received permission to go ahead with SCNT, and Dr. George Daley, who is seeking it, say they won’t be offering compensation. (Both researchers are using private money to fund their work.) “Women have to be willing to donate for the good of science,” says Daley.
And would they? “I’d be the first one in line,” says Alta Charo, an ethicist at the University of Wisconsin Law School, who watched a close childhood friend die of Lou Gehrig’s disease in her 30s. The idea that women might be co-opted or unable to weigh risk against benefit makes Charo’s blood boil. “We recruit people all the time for drug trials,” she says. Pat Parkhouse, who went through the egg-retrieval process for IVF to produce twin toddlers Jack and Bailey, says she’d donate to science in a heartbeat. Eight years ago Pat’s husband, Steve, suffered a traumatic brain injury in a car accident. Once an avid golfer and skier, he now struggles to grab hold of a pen and can’t walk without assistance. “If you were to tell me there’s only a 1 percent chance this would ever benefit my husband, I’d go with that 1 percent,” she says.
In Massachusetts, a 34-year-old named Kim, who wants to protect her 8-year-old son from the Parkinson’s that killed her grandfather, is blazing the trail. She is one of about a dozen women who have donated eggs to the Bedford Stem Cell Research Foundation. Director Ann Kiessling isn’t using the eggs for SCNT—she’s attempting to derive stem cells directly from unfertilized eggs—and she does compensate donors about $4,000 to cover time, travel and child care. But Kiessling’s program suggests that Barnett, Charo and Parkhouse aren’t alone in their readiness to volunteer for science.
Sometime in the future, egg donors may become obsolete. Daley, of Boston’s Children’s Hospital, is trying to create human egg cells in a Petri dish. His goal: to study the biology of egg development, and to generate lab-made eggs for SCNT, which he hopes will allow him to make blood stem cells, customized for patients suffering from diseases like sickle cell anemia and leukemia. “You have to keep your mind open that you may not succeed,” says Daley. “But you also have to dream.” For Kim Barnett and Pat Parkhouse, dreams—about curing a father and a husband—are better than nothing at all.
© 2005 Newsweek, Inc.