- Spring 2005-

Report Reveals Americans Support Most Uses of Reproductive Genetic Testing

A majority of Americans believe it is appropriate to use reproductive genetic testing to avoid having a child with a life-threatening disease, or to test embryos to see if they will be a good match to provide cells to help a sick sibling, a new report from the Genetics and Public Policy Center reveals.

However, most Americans also believe it would be wrong to use genetic testing to select the sex or other non-health-related genetic characteristics of a child.

"Public debate and media coverage of reproductive genetic technologies hide a surprising level of concordance among Americans for using genetic testing to identify risks of disease," says Kathy Hudson, director of the Johns Hopkins University-affiliated Center, which evaluated the study.

The results of what is believed to be the largest public opinion survey ever conducted of American attitudes toward genetic testing reveal that more than 67% of Americans approve of genetic testing of embryos during in vitro fertilization (IVF) procedures to select those embryos free of a fatal disease-causing gene mutation to transfer to a woman's uterus. High levels of support for this application are shared across most demographic groups-men, women and different racial and ethnic groups; lowest levels of support (49%) are found among fundamentalist and evangelical Christians. Perhaps surprisingly, a majority (52%) of those who assign human embryos maximum "moral worth"-deserving of utmost respect and protection-also approve of this application.

The studies probed the use of testing embryos, fetuses and adults. Information from genetic tests can be used to decide whether to attempt, continue or terminate a pregnancy, or to select which embryos produced through IVF to use to try to start a pregnancy.

While most participants had heard of genetic testing at some level, the pace of technology in this field rapidly has outstripped public awareness, the study found. Awareness about some of the more advanced technologies available-such as pre-implantation genetic diagnosis (PGD) performed on embryos in the lab before they are placed in the mother's uterus-was very low among all demographic groups.

Many focus group participants mentioned that use of reproductive genetic technologies represents a "slippery slope" on the way to "treating children like products." This concern was shared by fully 70% of survey respondents.

For many participants, these technologies raise concerns about how society might treat individuals with disabilities in a world where the birth of disabled persons might be preventable, and where the cost of testing and treatment might lead to disparities in who can afford them.

The study reports that 84% of survey respondents are "concerned about unregulated reproductive technology getting out of control." A majority of surveyed Americans "wants and expects oversight to ensure safety, accuracy and quality of reproductive genetic testing." For example, 61% of respondents agreed that the safety and quality of PGD should be regulated.

But 70% of survey respondents also are "concerned about government regulators invading private reproductive decisions." Indeed, only 38% support the idea of the government regulating PGD based on ethics and morality.

"These exceptionally nuanced attitudes of the American public are not mirrored in the polarized political debates that currently paralyze public policy," Hudson notes.