Reproductive Genetic Testing: Issues and Options for Policymakers
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Reproductive genetic testing offers prospective parents information about their risk of having a child with a genetic disease or characteristic. This information can be used to help prospective parents make reproductive decisions both before and during a pregnancy. Before pregnancy, prospective parents who know they have a risk of bearing a child with a genetic disease may choose to avoid pregnancy; use donated eggs, sperm or embryos; adopt, use in vitro fertilization followed by preimplantation genetic diagnosis to select those embryos free of a particular genetic mutation or pursue pregnancy better informed and prepared for the possibility of bearing an affected child. After pregnancy has begun, genetic testing can provide reassurance if tests are negative. Positive prenatal genetic test results can give parents time to prepare for the birth of a child with a particular disorder, or be used as the basis for a decision to terminate the pregnancy. Reproductive genetic testing raises a variety of concerns. Some care most that the tests are accurate and reliable. Yet, unlike drugs and medical devices, genetic tests - including those to test embryos and fetuses - are not required to meet standards of accuracy and reliability before they are marketed. Some agencies within the federal government regulate certain limited aspects of genetic testing, but there are gaps in the regulatory process. A genetic test can only identify the presence of a particular mutation or characteristics. It cannot ascribe social significance to that finding. Some worry about the potential uses of genetic tests. For example, they fear a world in which parents choose their child's height, eye color, intelligence level or other non-health-related trait. While these possibilities are all hypothetical, it is currently possible to choose the sex of one's child, and some believe this use of testing is inappropriate. Some also fear that as testing becomes increasingly available, people will face increased pressure to test, both to have the "very best baby" possible and to avoid the birth of an "unhealthy" child. Some people feel there should be limits on reproductive genetic testing. But what should those limits be? Who should set them? These questions raise ethical, social and legal issues that cannot be resolved by science and technology alone. Finally, concerns have been raised that access to genetic tests is not equitable, and that tests are not being delivered at the right time and with the appropriate context and counseling. To help inform public discussion and facilitate policymaking around these issues, the Genetics and Public Policy Center - funded by The Pew Charitable Trusts - has produced a report, Reproductive Genetic Testing: Issues and Options for Policymakers. This report presents a range of policy options that address genetic testing; it is supported by expert analysis that considers the potential effects, positive and negative, of a variety of different policy directions. The report develops policy options around four key areas of concern: (1) use of tests, (2) safety and accuracy, (3) access and (4) delivery. The options present a range of possible roles that federal and state governments and private entities could play in overseeing the development and use of these technologies, and describe the strengths and weaknesses of each approach. The options were developed by the Center through expert analysis and consultation with a variety of experts representing a wide range of political and religious viewpoints; the options were also informed by the results of the Center's extensive public opinion research. A companion report, Reproductive Genetic Testing: What America Thinks, reveals opinions about how regulation should be implemented and who should control regulation, ranging from no regulation at all to government regulation of both the safety and ethics surrounding the use of these tests.