Advances in science, especially the completion of the human genome sequence, have led to greater understanding of the role of genes in health and disease. Genetic tests for diseases and disease risks are available currently and new medicines and preventive strategies are on the horizon.
Many people first encounter genetic testing when having a baby. Reproductive genetic testing — carrier testing, prenatal genetic testing, preimplantation genetic diagnosis — combines the newest advances in genetics with the most profound human activity of creating life. Reproductive genetic testing provides information: information about the risk of parents passing a genetic mutation to their children; information about the genetic characteristics of embryos produced through in vitro fertilization; information about the genome of a fetus in utero. This information can provide reassurance to prospective parents, or the basis for important decisions: to attempt a pregnancy or not; to transfer an embryo to the uterus or not; to continue a pregnancy or not. The growing availability and use of reproductive genetic testing presents a host of complicated ethical, legal and social issues.
New genetic technologies will touch the lives of millions of Americans. Yet, there is relatively little oversight of reproductive genetic testing. As the number and type of genetic tests grows and their use becomes more widespread, the time has come to seriously consider whether and how these new technologies will affect individuals and shape society, and whether changes in oversight are needed. Some believe that the decision to use reproductive genetic testing should be left up to individual parents in consultation with their doctors. Others believe that reproductive genetic tests should be either controlled stringently or banned entirely.
The growing debate about the use and oversight of reproductive genetic testing largely has been framed by two opposing views: those who see reproductive genetic testing as an opportunity to prevent suffering and who oppose limitations on research, technological advance and reproductive choice; and those who believe that reproductive genetic testing will have adverse ethical and social impacts and who support restrictions on its development and use. The views of most Americans, however, are more nuanced and elastic, reflecting the tensions among hopes, values and personal experience.
In January 2003, the Center held its first conference, "Reproductive Genetics Policy: Framing the Issues." The conference convened 70 experts representing a broad range of disciplines and perspectives to help the Center identify key issues to focus on in the development of policy options. The meeting successfully illuminated those areas where new policies are needed, even if there is considerable disagreement about what those policies should be.
In January 2004, the Center released the report, "Preimplantation Genetic Diagnosis: A Discussion of Challenges, Concerns and Preliminary Policy Options Related to the Genetic Testing of Human Embryos." The report addressed one of the newest reproductive genetic testing options, preimplantation genetic diagnosis (PGD), which is used currently by families seeking to have a child free from a specific inherited genetic disease or, less often, to have a child with specific genetic characteristics, such as a tissue type that matches that of an ailing sibling. PGD also has been used to select the sex of an embryo, both to avoid sex-linked disease and to satisfy parental preference.
Also in January 2004, the Center held a forum on PGD, "Custom Kids? Genetic Testing of Embryos," which featured a panel discussion that included former House Speaker Newt Gingrich, Former Clinton White House Chief of Staff John Podesta, and former National Institutes of Health Director Bernadine Healy. Both the report and the forum were intended to serve as tools to catalyze broad public discussion about this profound use of genetic testing and to aid decision makers in considering what policies can best keep pace with rapid advances in reproductive genetics.
In late 2004, the Center published three reports on reproductive genetic testing, including an analysis of policy options, the results of a public opinion survey about what Americans think and feel about the growing field, and the summary of a public engagement project, the Genetic Town Hall, that explored public opinion about reproductive genetics in a town hall setting.
The Center also developed a report on policy options to address human germline genetic modification (HGGM). HGGM would involve making a permanent alteration to the genetic code that could be passed on to future generations. In December 2004 the Center held a conference, "Babies by Design: Policy Options for Human Germline Genetic Modification," which brought together more than 70 experts from the fields of science, ethics, law and religion to consider the issues involved.
The HGGM policy option report and a comprehensive report detailing the current debate over reproductive and research cloning on the federal, state and international level were published in 2005.
Last updated 3/2007