Reprogenetics: Law, Policy, and Ethical Issues

Preface

Preface From the cloning of Dolly to the mapping of the human genome and the isolation of human embryonic stem cells, nations around the world continue to grapple with the possibilities posed by new genetic technologies, and especially with the question of how to harness and direct those possibilities for the benefit of humankind. Nowhere is that struggle more necessary and subject to more controversy than in the arena of reproductive genetics, or what the authors of this book call reprogenetics. There is an astonishing lack of regulation of reprogenetic technologies in the United States. At the same time, many voices have called for leadership on this issue. It is here that our book enters the fray. In this book we look at the ethical and public policy issues raised by the burgeoning scientific and commercial enterprise that is reprogenetics. Broadly defined, reprogenetics includes all interventions involved in the creation, use, manipulation, or storage of gametes and embryos. This is a broad yet distinct class of interventions. As we define it, reprogenetics includes procedures such as in vitro fertilization (IVF), the genetic alteration of egg and sperm, and techniques such as research involving the derivation of human embryonic stem cells, including therapeutic or research cloning. Not included are interventions on embryos or fetuses that are inside a woman’s body. Reprogenetic technologies form an integral part of infertility treatments, from mainstream techniques such as IVF to experimental techniques such as ooplasm transplantation. In addition, much cutting-edge research aimed at curing or treating infertility, but also at addressing some of the most debilitating diseases, uses human embryos, and therefore falls under the rubric of reprogenetics. There has been a remarkable lack of meaningful moral conversation and public policy concerning the use of reproductive technologies in the United States. As a result, those technologies are subject to no, minimal, or ad hoc regulation . This policy and regulatory void is in sharp contrast to the efforts made in nations such as Canada and the United Kingdom, with which the United States shares cultural, legal, and historical ties. By contrast, genetic technologies have been subject to more formal regulation in the United States, although this regulation tends to isolate the oversight of one technique from another. There are explanations for the historical separation in policy and regulation of reproductive and genetic technologies. Until recently, they were distinct areas of endeavor. Not only have genetic research and reproductive research been conducted in isolation from each other, but genetic science has been considered the purview of molecular biologists, while reproductive science has been conducted by reproductive endocrinologists, obstetricians, and gynecologists. In addition, genetics has offered very few clinical services, while reproductive medicine has offered many. Consequently, the fact that public policy conversations about reproductive technologies and genetic technologies have proceeded on separate tracks has been relatively unproblematic—until now. We have entered an era in which the possibilities for human reproduction have been expanded by genetic technologies. Together these technologies hold the potential for some wonderful medical advances in disease prevention. However, as we combine genetic technologies with assisted reproduction, we move one step closer to designing the next generation of human beings. The increasing use of reprogenetic technologies challenges our concepts of who we are, who we should be, and what kind of society we want to live in. For example , reproductive medicine, once aimed at helping people overcome infertility, now has the ability to give infertile and fertile people the ability to choose the sex and some of the characteristics of a child that will be born to them. Where an existing child has a disease that requires a transplant or transfusion , finding a suitable donor may lead parents from the family tree to the fertility doctor. It is possible to create embryos in vitro and then choose which will be implanted, stored, or discarded based on each embryo’s genetic compatibility with an existing child. Children conceived in this manner are referred to in the media as “designer babies” and “savior siblings.” The desire to save an ailing child is laudable and complicates the ethical picture of creating a child for the purpose of providing transplantable blood or tissue for another. While the ethics of creating savior siblings are debatable, sex selection based on parental preference is widely regarded as unethical in the international community. Clearly, sex selection may have profound implications both for the embryos selected and for children already born. Our concept of what it means...