Reprogenetics

Abstract: The impetus for this review is the intriguing realisation that eugenics, viewed as dystopian and authoritarian in most of the 20th century, is in the process of being reinterpreted today--in the context of reproductive genetics--as utopian and liberal. This review offers an analytical framework for mapping the growing literature on this subject in order to provide a summary for both teaching and research in medical sociology. Recent works are subsumed and explored in three areas: historical criticism of the 'old eugenics'; the continuation of this stream in the form of criticism of reprogenetics as a new, 'backdoor' eugenic regime of bio-governmentality--an area which also includes the application of Foucauldian and feminist perspectives; and the recent enthusiasm regarding 'liberal eugenics,' claiming that reprogenetic decisions should be left to individual consumers thus enhancing their options in the health market. The review concludes by discussing and illustrating potential research directions in this field, with a focus on the social and ethical aspects of 'community genetics' and its emerging networks of individuals genetically at risk.

Abstract: At the first of the discussions that led eventually to this report, a respected researcher-clinician in the world of reprogenetic medicine referred to his field as "one big embryo experiment." The phrase nicely captures what this report 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 cells that can be coaxed to cure disease; to creating, selecting, and altering them for the sake of producing children. This report focuses on that 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." (1) 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, (2) and with structural changes arise 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. But concerns about reprogenetics are not only about safety. Just as important are concerns about the well-being of children produced by these techniques--and about the well-being of the families and society that will welcome those children. Are we in danger of allowing the 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? (3) Put positively, what can we do to increase the chances that these techniques are used in ways that further the happiness of children, families--and ultimately the well-being of our society as a whole? The answers to these questions will rest on fundamental beliefs and commitments to such values as liberty, equality, solidarity, and justice. They will likely 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 document, cannot help but have views of our own about some of these contested questions. But our primary purpose is nor 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 market. 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 report is divided into five parts: In the first, we delineate what we mean by reprogenetics. In the second, we identify some of the ethical concerns that commentators have broached about reprogenetics and argue that questions about well-being must be part of the policy conversation. Part three 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. …

Abstract: As a feminist updating of Foucauldian analysis, the article makes the point that ‘the lesbian’ was not significantly exposed or seriously interpellated by Danish official discourse until the political debate on new reproductive technologies and reprogenetics accelerated at the end of the 20th century. In the 1990s, the debate thus constructed ‘the lesbian’ not only as an ‘unnatural mother’, but also as heiress to the monstrous figure of the ‘mad scientist’ whose tampering with the embryo had stirred the political mind in the previous decade. Deeply worried by developments in biotechnology, many politicians felt they should protect the embryo from this sinister scientist, and, subsequently, the innocent child from the monstrous lesbian. Hence, a majority of MPs voted for excluding lesbians and single women from access to assisted reproduction in medical clinics.

Abstract: From the cloning of Dolly the sheep a decade ago to more recent advances in embryonic stem cell research, new genetic technologies have often spurred polemical, ill-informed debates. Perhaps nowhere is this more evident than in the field of reproductive genetics, where difficult bioethical issues are distilled into sound bites and far-fetched claims for easy public consumption. The underlying complexities of reprogenetic research and practice are often drowned out by the noise. In this thoughtful and informed collection, Lori P. Knowles and Gregory E. Kaebnick bring together bioethicists from the United States, Canada, and the United Kingdom to examine the ethical and policy quandaries created by new genetic technologies. Featuring an overview of the field's history (including lessons to be learned from eugenics), comparisons of international and domestic governmental regulations, and discussions of how the market and public opinion affect research, this book considers both the risks and the benefits of combining genetic and reproductive technologies. Concluding with a cautionary call for increased regulation, Reprogenetics introduces fact, history, and reason into a public discussion of complex and vexing issues.