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Reprogenetics and Public Policy Reflections and Recommendations C H A P T E R T W E LV E At the first of the discussions that led eventually to the writing of this chapter , a respected clinician-researcher in the world of reprogenetic medicine referred to his field as “one big embryo experiment.” The phrase nicely captures what this chapter is about. It is about the ethical issues and policy challenges that arise in the context of researchers and clinicians doing new things with embryos. The range of such activities is wide and growing, from studying embryos for the sake of basic knowledge about developmental biology, to using them as sources of embryonic stem (ES) cells that can be coaxed to cure disease, to creating, selecting, and altering them for the sake of producing children . This chapter focuses on the last set of aims and emphasizes the need for improved public oversight—a need that grows more urgent as reproductive and genetic medicine converge to produce the new field of reprogenetics (Andrews 1999; Bonnicksen 1998; Silver 1997). For a variety of reasons, research involving the use, creation, alteration, and storage of gametes and embryos is subject to little regulation in the United States. This situation is potentially dangerous. Unlike older in vitro fertilization (IVF) techniques, many new reprogenetic techniques make structural changes to cells,1 and with structural changes come concerns about the safety of the children produced by the technology. Further, both older and newer techniques raise concerns about the safety of the women who donate the eggs and the women in whom the fertilized eggs are implanted—the egg donors and the gestating mothers. E R I K PA R E N S A N D L O R I P. K N O W L E S But the concerns that are expressed in relation to reprogenetics have to do not only with safety. Just as important is the well-being of children produced by these techniques—and the well-being of the families and the society into which those children are born. Are we in danger of allowing a market mentality to colonize childbearing, as it has already colonized so much of our lives? Could the proliferation of techniques that increasingly enable us not just to have children but to choose characteristics unrelated to their health exacerbate our tendency to think of children as the objects of our making? Could these techniques lead us to think of ourselves as mechanisms that are valued for our individual parts or traits rather than as individuals who are valued for being unique wholes? Could it aggravate some forms of unfairness, or complicity with unjust norms? (Buchanan et al. 2000; Little 1998; Mehlman and Botkin 1998). Put positively, what can we do to increase the chances that these techniques will be used in ways that further the happiness of children, families, and ultimately our society as a whole? The answers to these questions must be pursued within a framework of fundamental beliefs and commitments to such values as liberty, equality, solidarity , and justice. They are likely to be complex and will sometimes reveal deep disagreements. But such disagreement should not stand in the way of trying to talk together about matters of such great importance. We, the authors of this chapter, cannot help but have views of our own about some of these contested questions. But our primary purpose is not to defend those views. Rather, we wish chiefly to establish that our society needs to find better ways to grapple with—and regulate—reprogenetic activities. The future of reprogenetic practice is too important to be decided solely by the marketplace. We call for the creation of an oversight structure that will make possible a thorough and transparent policy discussion of reprogenetics and effective regulation of those facilities involved in reprogenetic research and services. The chapter is divided into five parts: In the first part, we delineate what we mean by reprogenetics. In the second part, we identify some of the ethical concerns that commentators have broached in relation to reprogenetics, and we argue that questions about well-being must be part of the policy conversation. The third part describes the historical roots of our current oversight situation. Reproductive medicine and genetics have long been overseen separately, and with very different degrees of care. The politics of abortion have largely prevented any effective oversight of reproductive medicine. But as reproductive medicine and genetics converge, the current state of...

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