R. Downey, R. Geransar
Mar 22, 2008
Citations
1
Influential Citations
24
Citations
Journal
Health law review
Abstract
Introduction Stem cell research (SCR) is an important new area of biomedical research that offers promising therapeutic possibilities for a wide range of diseases and injuries. However, it is also a research domain filled with many players and fraught with ethical, legal and social issues, posing significant challenges to policy makers. From regulators who make decisions about how scientists can (or cannot) carry out their work, to patient organizations with vested interests in therapeutic promises, from opponents of the research, to interested publics, SCR has managed to intrigue, provoke, promise and dismay. As a controversial technology, SCR has provoked sustained public interest. It is not surprising that stem cell policy has been attentive to what policy makers perceive as the views of publics and stakeholders. In this paper, we explore how different publics have responded to SCR. We also examine the roles and impacts of interested stakeholder groups, including patient groups, organizations opposed to certain forms of SCR and scientific research organizations. These stakeholder groups express their viewpoints in various arenas including the media, official committees, parliamentary arenas and research networks. We differentiate between different national contexts, and where possible, different segments of publics. Public perceptions of SCR vary widely, reflecting controversies such as the varying perceptions of the origin of the cells. Stem cells can be derived from adult tissues and organs, including the umbilical cord blood (UCB) or bone marrow (adult stem cells, or ASCs); aborted fetal tissue (fetal stem cells); or human embryos (embryonic stem cells, or ESCs). Although embryonic stem cells are often touted for their pluripotent properties, there is scientific evidence that stem cells from some non-embryonic sources also have pluripotent-like properties. (1) The future of stem cell therapy is thought to depend in large part upon matching specific sources of stem cells to the diseases for which they are the most suitable as a treatment. (2) This empirically-driven 'source / disease match' framework within the scientific community is in stark contrast to the normative political discourse that dichotomizes the stem cell debate between "adult" versus "embryonic" stem cell sources. Another part of the debate around SCR has centered on the use of human embryos in research. Human embryos can be obtained from in-vitro fertilization (IVF) clinics that have excess embryos in storage (with consent from the donors), or through a process called somatic cell nuclear transfer (SCNT), the basic technique of cloning, in which the nucleus of an adult cell is transferred to an enucleated egg. The process of cloning embryos for research is often referred to as "therapeutic cloning", despite the fact that no clinically proven ESC-based therapies exist as of yet. (3) The complexity of discourses around SCR therefore presents challenges for policy makers and publics, resulting in uncertainty. Providing opportunities for broader engagement and participation in SCR research could enhance knowledge, transparency and participation among public stakeholders. 1. Attitudes of Publics and Beneficiaries of Stem Cell Research Ulrich Beck's influential Risk Society argues that a key characteristic of today's social and political landscape is that publics have become more critical regarding scientific and technological issues. (4) Moral risks related to SCR include concerns about the status of the embryo, in addition to other less tangible concerns related to the transgression of moral boundaries, as illustrated dramatically by the cloning debate. (5) In the media, the cloning controversy has often been represented through metaphors, e.g., comparing biotechnology to Frankenstein or Boys from Brazil, thus emphasizing dystopic views of the new technology. (6) SCR has also been associated with the same set of concerns that emerged around cloning, especially in the light of events surrounding Dolly the cloned sheep. …