Designing Our Descendants: The Promises and Perils of Genetic Modifications

Preface

Preface Rapid breakthroughs in genetic research, spurred by the Human Genome Project, advances in molecular biology, and new reproductive technologies, are raising the prospect that at some point in the future we will have the capacity to design our descendants. There have already been reports of the birth of children with intentionally modified mitochondrial DNA that resulted in unintentional inheritable genetic modification. Within the next generation, some fertility clinics may be inclined to offer services that attempt to control the genetic inheritance of children. The potential magnitude of these interventions makes it very important to improve societal awareness of the technical possibilities, give careful consideration to the implication of their use, and design a process for sustained public discussion before proceeding. For nearly thirty years, scientists and ethicists have called attention to the need for discussions related to inheritable human genetic interventions. As early as 1972, a few scientists warned that prospective somatic cell gene therapy would carry a risk of inadvertently altering germ cells as well as their targeted somatic cells.1 In 1982,a presidential commission declared that“especially close scrutiny is appropriate for any procedure that would create inheritable genetic changes.”2 A number of religious bodies and thinkers have urged great caution before proceeding with new technologies that will affect the genetic inheritance of future generations.3 To date, however, there has been little sustained public consideration of this topic.4 In the aftermath of the public furor over the announcement about the successful cloning of the lamb Dolly and the prospect it raised of human cloning, two programs within the American Association for the Advancement of Science (AAAS)—the Program of Dialogue on Science, Ethics, and Religion and the Scientific Freedom, Responsibility and Law Program—decided to undertake a multidisciplinary exploration of issues related to inheritable genetic modifications with the goal of encouraging public reflection and dialogue.The coeditors of this volume are the director of one of these programs and the former director of the other, and served as the staff directors for the project. The programs co-organized a two-and-a-half-year project to assess the scienti fic, ethical, theological, and policy issues related to inheritable genetic modification; formulate recommendations as to what, if any, types of research or applications should be encouraged; and suggest what kinds of safeguards should be instituted.Building on a forum on human germ-line issues co-sponsored by the two programs in September 1997,5 the project convened a working group of scientists, ethicists, theologians, and policy analysts. Much of the work was conducted in two subgroups, each of which was broadly multidisciplinary in composition. The first subgroup examined the feasibility of various kinds of inheritable genetic interventions, the risks involved, and the appropriate scope and limits of such research and applications on human subjects. The second subgroup considered the social, ethical, and theological implications of such interventions. The working groups met together to formulate findings and craft public policy recommendations. Members of the two working groups are identified in Appendix C. The first product of the project was an AAAS report, Human Inheritable Genetic Modifications: Assessing Scientific, Ethical, Religious, and Policy Issues.6 This volume is a further development of the analysis, conclusions, and recommendations in that report. Many of the members of the AAAS working group have contributed chapters to this volume. The volume of twenty chapters is divided into four parts. Part I includes an introduction to the volume and a chapter on definitional issues surrounding IGM that illustrates the importance of defining this area of research in a way that not only fosters sharp analytical treatment, but also offers the clarity necessary for developing public policy. Part II contains five chapters on the technical dimensions of genetic modi- fication, several by leading researchers in the field of somatic gene therapy. The authors critically examine a wide range of scientific technologies and potentially therapeutic applications related to IGM. The conclusion that can be extrapolated from Part II is that many hurdles remain before IGM would be technically feasible and safe to introduce in humans. Part III is composed of nine chapters that explore the ethical and religious implications of proceeding with IGM. Issues related to safety, justice, enhancement beyond what is necessary to sustain or restore good health, embryxii Preface onic research, reproductive rights, parent...