Designing Our Descendants: The Promises and Perils of Genetic Modifications

18 Designing Tomorrow’s Children: The Right to Reproduce and Oversight of Germ-Line Interventions

c h a p t e r e i g h t e e n Designing Tomorrow’s Children The Right to Reproduce and Oversight of Germ-Line Interventions Cynthia B. Cohen, Ph.D., J.D. Advances in genetics and reproductive medicine promise to extend our choices beyond whether and when to create children to what sorts of children to create . Today we can avoid having certain sorts of children by analyzing the genes of embryos in vitro and implanting only those that appear disease-free or carry desired traits, while discarding the rest. In the near future, geneticists predict, we will gain the power to create certain children by altering or replacing genes found in embryos by means of germ-line interventions. Should these interventions become a reality, our choices about what kinds of children to create will take a new turn. Germ-line technology will extend the time line for choosing what sorts of children to have farther into the future, enabling us to select not only the genes of tomorrow’s children, but also of their children and their children’s children. Decisions about the use of germ-line interventions will necessarily be linked to choices about reproduction, for these interventions require the use of in vitro fertilization. Germ-line interventions will therefore implicate a right introduced into legal and ethical parlance relatively recently—the right to reproduce . This right is said to protect from state interference not only the choices of couples and individuals about whether to avoid reproduction, but also their affirmative attempts to reproduce. The thrust of this chapter is to argue that our growing power to select the genes and many of the characteristics of tomorrow’s children raises significant ethical and social challenges that require public discussion and, ultimately, public oversight. Among these are how we should carry out our obligation to protect the safety and welfare of our children and their descendants and whether selective interventions into the germ line for purposes of enhancement would collectively amount to a contemporary form of eugenics.The right to reproduce, I maintain, does not protect individual uses of germ-line interventions from state oversight. This does not mean that individuals and couples should have no say about whether to use these interventions in the future. It means that society has a responsibility to address the public policy questions raised by germ-line technology and to impose restrictions on its use when necessary to protect tomorrow’s children and to uphold foundational social values. The ethical and social challenges that germ-line interventions pose point to the need for anticipatory public discussion of standards that should govern their acceptance and use. The significance of these challenges, I maintain, also makes clear the importance of establishing a publicly appointed group to review germ-line research protocols and to recommend flexible guidelines for the development and clinical use of this technology in both the public and private sectors. This oversight body should include among its purposes assuring the public that the risks that germ-line interventions might pose to tomorrow’s children and future generations are being carefully assessed and that values fundamental to our constitutional democracy are being protected. The Right to Reproduce and Germ-Line Interventions The use of germ-line interventions would involve inserting a gene directly into the human egg, sperm, or early embryo, thereby affecting its developing reproductive cells. The most likely scenario is that a human egg would be fertilized in vitro and that genetic modifications would be introduced into the resulting embryo that would be integrated into all the chromosomes of all of its cells, including its germ or reproductive cells. The embryo would then be implanted in the uterus of a woman and, if the pregnancy were carried to term, would emerge as a child with an altered genetic composition. That child would Oversight of Germ-Line Interventions 297 go on to transmit its altered genes to its children who, in turn, would pass them along to future generations. In the current state of scientific development, at least one of the new reproductive technologies, in vitro fertilization, would be needed in order to pursue germ-line interventions. The question of whether individuals and couples should be free to use this and other methods of assisted reproduction without state interference is said by some to have been answered in the affirmative...