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The newspaper of The Johns Hopkins University January 5, 2004 | Vol. 33 No. 16
Forum Puts Spotlight on Ethics of Genetic Test

Kathy Hudson

JHU Genetics and Public Policy Center opens discussion about PGD

By Greg Rienzi
The Gazette

Expecting parents often get asked whether they want a boy or a girl. Idle small talk? Perhaps, but today this once-wishful reply can be made real due to the existence of a medical procedure known as preimplantation genetic diagnosis.

First performed in 1989, the complex and still rare procedure is intended to weed out genetically defective embryos before they have a chance to develop. It is usually requested by prospective parents who are concerned about passing an incurable genetically based disease or disorder, like cystic fibrosis or Huntington's disease, to their child. Typically, one or both partners have been genetically screened and found to be a carrier.

Presently, cells from an embryo can be checked for dozens of genetically determined diseases. PGD can also be used to select the sex or other genetic characteristics of embryos.

Predictably, the procedure has fostered much debate. Is the power to identify and select the genetic characteristics of their children one parents should have? And, if so, should the government impose strict limits on the procedure's use?

These and similar questions will be fielded at an upcoming forum titled "Custom Kids? Genetic Testing of Embryos," hosted by the Johns Hopkins University Genetics and Public Policy Center. The event will convene a diverse panel of leaders to discuss the ethical, social and scientific implications of this potent new technology. It will take place from 9 to 11 a.m. on Thursday, Jan. 8, at the Renaissance Hotel in downtown Washington, D.C.

The panel will include Newt Gingrich, former speaker of the House; Laurie Goldberg Strongin, whose son had a genetic disease; Amy Laura Hall, assistant professor of theological ethics at Duke University; Bernadine Healy, former president and CEO of the American Red Cross and former NIH director; Paul Miller, commissioner of the Equal Employment Opportunities Commission; Tom Murray, president of the Hastings Center, a bioethics research institute; John Podesta, president of the Center for American Progress and chief of staff to President Clinton; and Joe Leigh Simpson, chair of the Department of Obstetrics and Gynecology and professor of genetics at Baylor College of Medicine.

The event will begin with a short introduction on what PGD is, followed by a presentation on current policy governing the procedure and then a panel discussion.

Kathy Hudson, founding director of the Genetics and Public Policy Center, said that the primary intention of the forum is to stimulate a public conversation on the current and future use of preimplantation genetic diagnosis.

"PGD grew up in a relatively unregulated environment, and many feel it's in need of some reform and oversight," said Hudson, who is also a professor at the School of Medicine's McKusick-Nathans Institute of Genetic Medicine. "Some are asking, Should this procedure be allowed at all? Others want to know if there should be limitations placed on its use, such as only in the case of a couple at risk of having a child with a severe genetic disease."

The PGD procedure begins with a woman being given a drug to induce "super ovulation," resulting in the creation of many eggs that are then harvested. Next comes in vitro fertilization, where the eggs are placed in a dish and fertilized by sperm, typically from the woman's partner. After three days, the embryos have reached a stage when one or two cells can be removed and subjected to molecular analysis that helps identify specific DNA or chromosome anomalies. Embryos that are found free of abnormalities are then implanted in the woman's womb. The others are usually frozen or destroyed. If the procedure does not produce a pregnancy, it can be repeated.

To date, roughly 1,000 babies have been born following PGD, which costs in the range of $12,000 to $16,000.

Garry Cutting, a professor at the Institute of Genetic Medicine and director of the DNA Diagnostic Laboratory at The Johns Hopkins Hospital, said that the technology is still in its infancy and less than a dozen labs worldwide offer the procedure. However, he said Johns Hopkins is preparing to do a PGD program, and he expects the screening to become much more widespread in the next five to 10 years.

"This technology offers parents a considerable, terrific option," Cutting said. "Through the use of preimplantation genetic diagnosis, they can have a much higher degree of confidence that once the pregnancy ensues, the child will not be inflicted with the genetic disease that one or both of the parents is a carrier for."

Cutting said that while prenatal testing offers some of the same benefits, one inevitable outcome of that procedure may be the termination of the pregnancy, which carries with it emotional, physical and financial costs.

Cutting said that this week's forum can and should be a springboard for public debate on the PGD topic.

"I expect the talk to focus on what kinds of things we should consider testing for," he said. "One could certainly envision the government regulating what laboratories could offer. Perhaps the public will ultimately decide that offering preimplantation genetic diagnosis for the determination of sex, for example, is OK. We need to first ask these questions and discuss what the ethical and political ramifications are for the use of this technology."

The Genetics and Public Policy Center was established in April 2002 to be an independent and objective source of information on genetic technologies and genetic policies for the public, media and policy-makers. The center, funded by the Pew Charitable Trusts, is a part of the Phoebe R. Berman Bioethics Institute at Johns Hopkins.

Hudson said that the Jan. 8 event fits in perfectly with the center's mission in that its purpose is to inform and offer a holistic look at an issue.

"This event, I feel, will help begin to stimulate public conversation on this technology and future policy directions," she said. "The center does not make recommendations. Rather, we propose a set of alternatives and a detailed accounting of the pros, cons and consequences for each of those alternatives. Reproductive policy in general tends to be a very polarizing debate. We are hoping the information that comes out of this event will get us outside the extreme corners of the issue and toward some middle ground."

To register for the event or to learn more about the Genetics and Public Policy Center, go to


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