Reproductive Genetic Testing: What America Thinks

Advances in reproductive genetic technologies offer prospective parents an increasing array of options to help them have healthy babies, but these same advances also can raise troubling questions about the extent to which parents can or should choose the characteristics of their children. Parents today can be tested to see if they carry a mutation in a gene that puts them at risk to have a child with a serious genetic disorder. Parents who are at risk can test embryos created through in vitro fertilization (IVF) and select which embryos to transfer to the mother's womb, or test a fetus during pregnancy to see if it is affected. Today we test for serious genetic disorders. In the future, as we learn more about genes, it may be possible to test for less serious disorders, or even characteristics such as behavior and intelligence. This report presents the first look at the largest ever series of social science research studies to learn what Americans know, think and feel about the use and regulation of reproductive genetic testing - carrier testing, prenatal genetic diagnosis and preimplantation genetic diagnosis (PGD). These studies, funded by The Pew Charitable Trusts and conducted by the Genetics and Public Policy Center between October 2002 and August 2004, include 21 focus groups, 62 in-depth interviews, two surveys with a combined sample size of over 6000 people, and both in-person and online Genetic Town Halls. The focus group and interview responses provide a detailed and textured portrait of peoples' attitudes. Participants were asked a series of questions about: awareness and knowledge of reproductive genetic tests; whether they approve or disapprove of using these technologies for purposes ranging from diagnosing a baby with a fatal childhood disease to knowing a baby's sex; thoughts and concerns about the future use of these technologies, including the potential for discrimination, the potential for treating children like products and who will have access to these technologies; and how they would like to see reproductive genetic tests regulated. Survey participants were asked a series of similar questions about their beliefs concerning the appropriate uses of these technologies and whether and how they might be regulated. They were also asked a series of questions about themselves - sex, age, race and ethnicity, religious affiliation, income level, education level, political affiliation - determine whether any significant patterns or trends in attitudes align with any particular demographic groups. Americans' awareness of genetic technologies varies; 90 percent have heard about IVF but only 40 percent have heard about PGD - screening of IVF embryos for genetic diseases or characteristics in order to select which embryos to transfer into the woman's womb. In general, Americans approve of using reproductive genetic tests to prevent fatal childhood disease, but do not approve of using the same tests to identify or select for traits like intelligence or strength. Using reproductive genetic tests to identify increased risks for adult-onset diseases generates mixed approval levels. Survey participants were asked to rank the moral worth of embryos and fetuses. Forty-seven percent of Americans assigned an embryo in the womb maximal moral worth (on a five-point scale), while only 19 percent assigned maximal moral worth to a human embryo frozen in an IVF clinic. The definition of "moral worth" was left to the survey participant. More than 53 percent of all respondents strongly agree with the statement "reproductive genetic technology is potentially the next step in human evolution." In general, Americans would like to see more oversight in the area of reproductive genetic testing. Opinions about how regulation should be implemented and who should control regulation, however, range from no government regulation at all to government regulation of both safety of and ethics surrounding the use of these tests. A companion report, Reproductive Genetic Testing: Issues and Options for Policymakers, presents an update on the science behind reproductive genetic testing, outlines key scientific and medical facts, provides a description of the current policy landscape, assesses current oversight for the development and use of reproductive genetic tests and offers a comprehensive description of possible policy options to guide the development and use of reproductive genetic testing