Stem cell research, publics' and stakeholder views.

AuthorDowney, Robin

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. Arguments from the abortion debate also resurface around stem cells, because of the use of embryos in some forms of SCR. Conversely, the promise of SCR holds broad appeal for proponents, in both the public sphere and in the medical and scientific community.

    This section begins by discussing general public opinion in jurisdictions where SCR has been particularly controversial, including Canada, the US, the European Union (EU) and Australia. Patients' perspectives are also examined. Publics' perceptions of SCR in different countries and regions may be discussed in terms of levels of familiarity with SCR, perceptions of different sources of stem cells and stability of public opinions over time. In countries in which SCR is discussed in the context of highly polarized moral debates, factors such as the reported levels of "religiosity" of publics become a key explanatory variable. Trends within the EU as a whole are offered with the caveat that they represent average values of poll results from countries with very different social and political contexts surrounding SCR. Also, the notion of "publics" is treated as distinct from other "stakeholders," the latter term referring to individuals whose collective actions are guided by or directly serve the mandate of an overarching organizational framework.

    1. SCR Awareness

      Public awareness of SCR has been highest in Canada and the US, and is not strongly correlated with public support. Greater familiarity with SCR among Americans (83%), compared to Canadians (68%), (7) however, may well be rooted in media coverage and representations, rather than in informed understanding of the science involved. In the US, SCR has been a high profile issue in the media, in part due to the advocacy efforts of celebrities such as Christopher Reeve, Michael J. Fox and Nancy Reagan. Media characterizations of SCR in cartoons--which have painted positive and negative pictures of the potential impact of SCR in the US--may also be considered "easy access points" for engagement of publics in the stem cell debate. (8) Reported awareness of SCR may therefore represent awareness and acceptance of the competing frames through which media presents the SCR debate, as opposed to awareness of the relevant scientific and policy issues. (9)

      In countries that are part of the EU, one in ten people on average admit to being "very" or "fairly familiar" with SCR. Familiarity is highest in Denmark (61%), Italy (48%) and the U.K. (45%), and lowest in some new member States such as Estonia (12%), Latvia (10%) and Lithuania (9%), as well as in Greece (9%). In the EU, there seems to be stronger correlation between awareness and support than in the US. (10) However, the extent of public awareness of SCR in the EU is not associated with the intensity of the public debate in individual countries, as might be expected. For example, in Germany, only 20% of respondents reported familiarity with SCR, despite intense public debate. (11) Finally, in Australia, while one-third report being familiar enough with SCR to "explain it to a friend", the majority indicated that they know little or nothing about the topic. (12)

    2. Perception of Benefits and Risks of SCR

      In Canada, the US and Australia, perceptions of benefits associated with SCR are far greater than perceptions of risks. The vast majority of respondents in all three countries anticipate that SCR "will improve their way of life" in the future. (13) In both Canada and the US, approximately nine out often people perceive "moderate" to "substantial" benefits from SCR. (14) In Australia, the same proportion of people consider stem cells "useful" for conducting medical research and for treating disease. (15) No systematic comparison is available on perceptions of benefits and risks across European countries. However, when survey respondents from EU Member States were offered categorical choices regarding what kind of information they want regarding SCR, (16) sixty percent expressed interest in information about the potential benefits and risks. (17)

      Perceptions of risks associated with SCR are generally low, but are higher in Canada and the US than in Australia. A majority in both Canada and the US perceive "moderate" to "no risks" in SCR (79% and 77%, respectively). However in Australia, over half of respondents consider "no risk" (18) ensuing from SCR, (19) compared to only one quarter in the US, and one fifth in Canada. (20) Perceptions of risk have been found to be the main drivers of the degree of regulatory stringency preferred by publics in Canada and the US. (21) For example, those who perceive moderate to high risks from SCR are also more likely to prefer that SCR be more tightly regulated than those who perceive little or no risks. In Canada and the US, however, perceptions of risks have not been found to have bearing on whether or not an individual will express overall support for SCR. Instead, perceptions of moral issues have been found to be the strongest determinants of individual support for SCR. (22)

      Due to the value-laden nature of the term "risk," it is important for all opinion-measurement tools to define the kind of risk being discussed in order to convey the most meaningful results. For example, surveys ought to differentiate between risks to embryos, donors and society. Unfortunately, not all surveys recognized this nuance. This distinction is particularly important in light of research showing that different concerns are expressed about SCR depending on the source of stem cells. Canadian focus groups show that the primary concern about ASCs is viability, and umbilical cord blood stem cells raise questions of informed consent and commercialization. ESC research raises primarily moral questions, and SCNT consistently conjured fears of misuse of the technology. (23)

    3. Support for SCR

      The majority of people in Canada, the US, the EU and Australia approve of...

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