"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. "But we also found that Americans fear a world where using genetic technologies may compromise many of the values our society holds sacred."
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 percent 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 percent) are found among fundamentalist and evangelical Christians. Perhaps surprisingly, a majority (52 percent) of those who assign human embryos maximum "moral worth" - deserving of utmost respect and protection - also approve of this application.
The report includes results from qualitative and quantitative studies of how Americans feel and think about reproductive genetic testing and how these technologies might best be regulated. Supported by a grant from The Pew Charitable Trusts, the Center's research included 21 focus groups, 62 in-depth interviews, two surveys with a combined sample size of more than 6,000 people, and both in-person and online town halls meetings. 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 preimplantation 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.
A Slippery Slope?
"The specter of unchecked advances raises many fears, such as designer babies, eugenics and genetically modified human beings," the report notes. Fully three-quarters of all survey respondents, for example, agreed with the statement, "Technology will inevitably lead to genetic enhancement and designer babies." Focus groups and town hall meetings, which allowed researchers to explore participants' responses in more depth, revealed that Americans don't fear the technologies per se, but rather fear that "unrestrained human selfishness and vanity will drive people to use reproductive genetic testing inappropriately," such as to select for non-medical but socially desirable characteristics.
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 percent of survey respondents.
According to the report, Americans "fear a world in which children are expected to be perfect, and parents are expected to do everything possible to prevent children with genetic disease from being born." 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.
A Need for Regulation
The study reports that 84 percent 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 percent of respondents agreed that the safety and quality of PGD should be regulated.
But 70 percent of survey respondents also are "concerned about government regulators invading private reproductive decisions." Indeed, only 38 percent 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.
A companion report, Reproductive Genetic Testing: Issues and Options for Policymakers, explores a variety of possible actions that public and private sector decision makers could take to oversee appropriate use, cost, access and safety of reproductive genetic testing, issues that arose in focus group discussions and town hall meetings.
"Many observers believe new policies - governmental or private - are needed to keep pace with the rapid changes in reproductive genetic testing," the companion report notes, ranging from enacting limits or bans on these technologies to leaving decisions about them up to parents and their physicians. The report outlines the full range of policy options to address the scientific, legal, regulatory, ethical, moral and societal issues raised by carrier testing, prenatal genetic testing, and preimplantation genetic diagnosis of embryos generated during IVF and presents the pros and cons for each. "Our purpose in this report is not to advocate on behalf of any particular policy, but to guide policy makers through the difficult issues that complicate all the available regulatory options," Hudson explains. "Any decisions - including the decision to maintain the status quo - should be undertaken with clear-eyed understanding of their potential impact."
The report concludes with a call for more research and a need for critical data - the number of people likely to use reproductive genetic tests, how people currently access the tests, and the safety and accuracy of currently available tests, among them - to develop appropriate and effective evidence-based policy.
Both reports are available on the web site for the Genetics and Public Policy Center, www.dnapolicy.org. Print copies are available by mail from the letterhead address.
The Genetics and Public Policy Center is a part of the Phoebe R. Berman Bioethics Institute at The Johns Hopkins University and is funded through a grant from The Pew Charitable Trusts. The mission of the Center is to create the tools needed by decision makers in both the private and public sectors to carefully consider and respond to the challenges and opportunities that arise from scientific advances in genetics. For more information, please visit the Center online at www.dnapolicy.org.