Seeking to jumpstart a public dialogue on a recently developed technique that allows couples to avoid or select for particular characteristics in their child, the Genetics and Public Policy Center at Johns Hopkins University organized a forum in Washington, D.C. on Jan. 8, where it presented a report on the technique, know as pre-implantation genetic diagnosis (PGD).
The release of the report "PGD: A Discussion of Challenges, Concerns, and Preliminary Policy Options Related to the Genetic Testing of Human Embryos," is part of a series of actions the Center hopes will allow informed people from diverse groups to weight in on whether or not, and how, this technology should be regulated.
A panel discussion during the forum featured several prestigious public policy figures including former Speaker of the House Newt Gingrich and former Clinton White House Chief of Staff John Podesta as well as the former director of the National Institutes of Health Director Bernadine Healy.
PGD is a technology that combines the relatively familiar process of in-vitro fertilization (IVF) and common genetic tests that can determine whether an adult, a fetus, or an embryo possess genes that will result in an inherited genetic disease (such as Cystic Fibrosis or Sickle-cell Anemia).
Eggs are harvested from the mother, fertilized, and allowed to grow until they have several cells that can be spared. Those cells are taken and the DNA can be analyzed with a number of existing techniques before implantation into the mother's womb.
The upshot of this is that parents who are at risk of passing a genetic disease along to their children can, if the procedure succeeds, be assured that their child will not have that disease. Parents are also able to choose the sex of the baby.
Additionally some parents, who's existing children need tissue transplants such as a bone marrow transplant, have conceived children that were designed to be a donor match for the other child.
This is not a case of using one baby for "spare parts" as the cells that were needed for the diseased child where harvested from the umbilical cord of the other child.
Opponents of the process tend to declare it "unnatural," and also make arguments that current uses of this technology could lead to its future use in the production of "designer babies" which would have enhanced abilities.
They also argue that, as mentioned previously, babies could be created with a mind towards using them for "spare parts." Proponents of the technique argue that it is just as natural as IVF, and that scientists have yet to, and may never, isolate particular genes as being responsible for traits such as intelligence and strength, thus eliminating the dangerous of engineering babies.
Some opponents are specifically concerned with the fate of the embryos that are not chosen for implantation.
One speaker at the forum, Laurie Goldberg-Strongin, gave the issue of PGD a human face. She gave an account of how her son Henry had been born with Fanconi Anemia, which meant he would require a bone marrow transplant from a compatible donor or he would die. The speaker and her husband made nine attempts over two years to conceive a child with a transplant match to their other son Henry using PGD. The couple, however, ran out of time and their son died of complications related to a non-sibling transplant of bone marrow, which was his only chance of survival. Other couples and children with similar diseases have since succeeded in saving their children by having another child by PGD.
PGD isn't currently regulated as such, but does fall under the purview of several different regulatory organizations including the Food and Drug Administration (FDA), the Centers for Disease Control (CDC), and the Center for Medicare and Medicaid Services.
The Center also plans to set up similar forums at locations around the country over the next few months to encourage the involvement of informed persons in formulating suggestions that will be delivered to the government on whether or what sort of regulations should be adopted for PGD. The Center doesn't endorse any one view on PGD, but rather seeks to facilitate the dissemination of information concerning the procedure while gathering samples of the spectrum of public opinion.
