While the loudest voices in the debate over preimplantation genetic diagnosis (PGD) focus either on restricting PGD or on letting families decide for themselves whether to use PGD, this framing "fails to reflect the public's more nuanced views" argues Kathy Hudson, director of the Genetics and Public Policy Center in the June 2006 issue of the journal Fertility and Sterility. The public's greater concern is that the government needs to make sure that PGD is safe and effective, she writes.
Hudson's paper is based on a series of focus groups, in-depth interviews, and surveys conducted for the Genetics and Public Policy Center between October 2002 and August 2004 with a combined sample size of more than 6,000. The Center is supported at The Johns Hopkins University by The Pew Charitable Trusts.
The paper summarizes the regulatory framework surrounding PGD, which involves removing one or two cells from a six- to eight-cell embryo created through in vitro fertilization. Each cell can be analyzed to detect either a chromosome or single gene disorder, or a specific genetic characteristic such as sex. Very little direct oversight of PGD currently exists, Hudson found, even though the test is increasingly being used by parents to identify and select the inherited characteristics of their children before pregnancy. More than 2,000 children have been born following PGD.
The policy debate about PGD and similar reproductive technologies is stunted because it is currently cast in the same terms as the abortion rights debate, Hudson notes, even though the Center's research revealed a much more ambivalent public. For example, some people who feel that an embryo has the same moral status as a born baby nonetheless feel that it is morally acceptable to use PGD to test embryos for certain diseases and not transfer an embryo to a mother's womb if it is found to have a genetic disorder.
"This divisiveness around embryo politics...means that the public's desire for oversight of the safety and accuracy of PGD is left unattended," Hudson maintains. While the public's views should not be the only driver of public policy, she says, "attentiveness to these views could help redefine and reframe the policy debate to address more productively some of our shared concerns about the development and use of PGD."
Hudson, K. Preimplantation genetic diagnosis: public policy and public attitudes. Fertility and Sterility Vol. 85, No. 6, June 2006.
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