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Emerging Ethical, Legal and Social Issues Associated with Stem Cell Research & and the Current Role of the Moral Status of the Embryo

Amy Zarzeczny & Timothy Caulfield

Published online: 14 May 2009 # Humana Press 2009

Abstract Since its early days, stem cell research, particu- larly human embryonic stem cell research, has been the focus of intense social debate, and the question of the moral status of the embryo has been a central issue in the controversy. Despite this friction, and while it has yet to obtain widespread success in clinical applications, stem cell research remains a great hope for future advances in healthcare. In this paper, we will discuss the results of our systematic literature review in which we examined recent social science, legal and biomedical discourse, as well as Canadian print media discourse, associated with stem cell research in order to assess the role the question of the moral status of the embryo currently plays in these forums, and to identify what other issues are emerging and receiving attention. This analysis will assist with recognizing the issues which are likely to inform future policy and will facilitate forecasting the probable direction of the continu- ally developing social discourse surrounding stem cell research.

Keywords Stem cell research .Moral status . Embryo .

Discourse . Policy . Emerging themes

Introduction

Since its early days, stem cell research, particularly human embryonic stem cell (hESC) research, has captured imag- inations and been the subject of both excitement and social controversy. This interest has been reflected in various

domains including the entertainment media, the popular press, scholarly discourse and policy forums—both national [1, 2] and international [3]. The question of whether, and to what degree, human embryos have a moral status requiring protection has played a significant role in that controversy [4, 5]. As such, issues associated with the moral status of the embryo have received considerable attention in the popular press as well as other areas of discourse [6, 7, 8]. The nature of the representations made in these realms, particularly the media, is important because they have the potential to inform and influence the public’s views [9, 10, 11] and to impact the policy making process, particularly if there is actual (or perceived) social consensus on the issue(s) [12].

The therapeutic potential of stem cell research, while remaining largely unrealized, continues to generate much enthusiasm [13, 14, 15]. This enthusiasm is often rejuve- nated by research developments including the emergence of technologies such as induced pluripotent stem (iPS) cells [16], interspecies somatic cell nuclear transfer [17], parthe- nogenetic embryonic stem cells [18], and embryonic stem cells derived from single cells of the embryo [19]. While the majority of these technologies do not involve human embryos and may have distinct scientific purposes and advantages, they are nonetheless commonly linked with hESC research in the prevalent discourse. In some cases, they are promoted or even celebrated as more ethical or acceptable alternatives [20, 21].

As these new technologies may not have been contem- plated at the time Canada’s legislation governing stem cell research, the Assisted Human Reproduction Act, 2004, c. 2 (AHRA), was crafted, and are not directly addressed in the legislation, they do not fit neatly within its parameters. As such, the manner in which they are or are not regulated is not entirely clear [22]. In view of these regulatory question marks and the pending review of the AHRA mandated by

Stem Cell Rev and Rep (2009) 5:96–101 DOI 10.1007/s12015-009-9062-4

A. Zarzeczny : T. Caulfield (*) Health Law Institute, University of Alberta, Edmonton, AB, Canada e-mail: [email protected]

the legislation (s.70), it is an ideal time to explore the current issues associated with stem cell research, as they are expressed in various forms of discourse. Whether directly, indirectly, or potentially both, these issues are likely to inform and influence the direction Canadian stem cell policy takes.

Approach

We conducted a systematic literature review to obtain initial impressions regarding the current state of legal, social science and biomedical discourse surrounding stem cell research, with a particular focus on examining the role currently played by the moral status of the embryo in these discourses. Our respective sources included the Legal Periodicals Full Text Database1, the Social Sciences Full Text Database2, and the Pub Med Database.3 We began with a limited snapshot of time—specifically January 1, 2007–September 16, 2008. The search term used for both the legal and social science discourse was “stem cell research”. For the biomedical discourse, we did a combi- nation of more limited searches to obtain commentary-type data rather than scientific results. Specifically, we searched for “stem cell research” (with limits to editorials, com- ments, consensus development conferences and lectures); ‘“stem cell research” & policy’; ‘“stem cell research” & “moral status”’; and ‘“stem cell research” & controversy’. All of our results were then screened for relevance, duplicate results were omitted and only items actually addressing stem cell research were accepted for analysis. For example, results where stem cell research appeared only in a footnote reference, or where it was listed with other ‘controversial’ topics but was not actually addressed, were discarded. Our resulting data sets were as follows: legal discourse: 12; social science discourse: 23, and biomedical discourse: 33.

We were also interested in identifying general trends in popular representations about stem cell research and chose Canadian newspapers as our initial sample. For the purpose of this preliminary review, we limited our search to a selection of Canadian newspapers using the Canadian Newsstand Database4 and, to control our sample size, confined our examination to a one year period, from September 16, 2007–September 16, 2008. Again, only results directly addressing stem cell research were accepted for analysis and duplicate results were omitted, with a resulting data set of 51 articles. Examples of omitted results included articles about the United States’ recent election which merely stated a candidate’s position regarding stem cell research, and articles addressing other biomedical issues in which stem cell research was only mentioned peripherally.

All of the data, including the legal, social science and biomedical discourse results, as well as the print media data, were assessed using a coding frame. The coding frame was developed to determine whether the data referred to the moral status of the embryo (either directly or indirectly) and if so, whether this issue played a peripheral, intermediate or central role in the discussion. The data were also reviewed to determine the context in which moral status of the embryo was raised. The categories established in the coding frame were as follows: moral status of the embryo identified as a reason to avoid hESC research; moral status of the embryo identified as a reason to pursue non-hESC research; moral status of the embryo identified as a consideration in stem cell research (i.e. in the absence of positive or negative connotations); moral status of the embryo rejected as a consideration in stem cell research, and ‘other’. Finally, the results were analyzed for other considerations (beyond the moral status of the embryo) and emerging themes were identified.

Discussion

In the first stage of our analysis, we examined the role played by the moral status of the embryo in the various types of discourse. Our results are presented in the Chart 1.

The trends revealed by these results are interesting, particularly those relating to legal and print media dis- course. As is evident in Chart 1, issues associated with the moral status of the embryo played a relatively minor role in the print media data, as compared to their more central role

1 Legal Periodicals Full Text Database is a bibliographic database containing information from legal periodicals – including law reviews, bar association journals, university publications, yearbooks, institutes, and government publications, covering court decisions, legislation and original scholarship – and books, with international coverage including the U.S., Canada, Great Britain, Ireland, Australia, and New Zealand. 2 The Social Sciences Full Text Database provides access to English- language journals covering the latest concepts, trends, opinions, theories, and methods from both applied and theoretical aspects of the social sciences, with international coverage including publications from the US, Canada, Great Britain, Europe, China, Africa, and other jurisdictions. 3 Pub Med provides access to approximately 5,000 biomedical journals published in the United States and worldwide in the fields of medicine, nursing, dentistry, veterinary medicine, health care systems, and preclinical sciences, as well as life science journals and biomedical articles.

4 Our sample included the following publications: Calgary Herald, Edmonton Journal, Globe & Mail, National Post, Ottawa Citizen, The Province (Vancouver), Toronto Star, Vancouver Sun, The Guardian (Charlottetown), The Telegram (St. John’s), The Daily News (Halifax) & The Gazette (Montreal).

Stem Cell Rev and Rep (2009) 5:96–101 97

in legal discourse. One potential explanation for the minimal role played by the moral status of the embryo in this forum may be related to the fact that, as discussed below, representations about scientific developments were so prev- alent in the print media discourse. It is also worthy of note that in the social science and biomedical discourse, the signifi- cance of the role played by the moral status of the embryo varied fairly evenly between the different categories. In order to highlight overall trends, we also combined the data from each type of discourse and applied the same analysis described above. These results are presented in Chart 2.

The trends revealed by our data suggest that while the moral status of the embryo may not always play a central role in the discourse surrounding stem cell research, it continues to be widespread. As seen above, the significance of its role varies depending on the form of discourse and there are domains in which it remains of more primary importance.

We were also interested in assessing the contexts in which the moral status of the embryo was raised. In doing so, we found that the most common context was as a reason to avoid hESC research. However, it is important to note that in the majority of these cases, the author in question was not necessarily expressing his or her own view or advocating for that position, but rather was identifying the

belief(s) of others, most commonly, President Bush or members of the Roman Catholic Church. The second most common context was the “other” category. In order of frequency, the three most prevalent “other” categories included the following: (i) moral status identified as being an issue of debate or controversy, often with the author either implying or directly stating that it is one which is unlikely to be resolved; (ii) moral status identified as the reason underlying the federal funding restrictions against hESC research in the United States, and (iii) one of the benefits of non-embryonic stem cell research techniques, specifically iPS cells, identified as being that they avoid the moral status issue. Each of the other contextual categories outlined above were represented, reflecting a diverse range of contexts in which the moral status issue is being framed.

Finally, we examined what other issues were raised in the data. We found that other considerations (besides the moral status of the embryo) were raised in the majority of our data (i.e. in 83.3% of the legal discourse, in 86.9% of the social science discourse, in 41.1% of the biomedical discourse and in 86.3% of the print media discourse). We grouped these other considerations according to similarity and a number of themes emerged, as outlined in Table 1: Emerging Themes.

Conclusions

Our results indicate, perhaps unsurprisingly, that issues associated with the moral status of the embryo continue to have an undisputable presence in the literature surrounding stem cell research. However, in many cases they do not appear to play a central role and the focus they receive and the contexts in which they arise vary widely both between and within different realms. Interestingly, in the data we reviewed, there appeared to be a relative lack of heat or contention surrounding questions about the moral status of

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Chart 2 The role played by the moral status of the embryo – all data combined

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Chart 1 The role played by the moral status of the embryo

98 Stem Cell Rev and Rep (2009) 5:96–101

Table 1 Emerging themes

Theme Frequency Types of discourse Examples:

Theories/Views on Policy Development

14% All • whether religious and/or moral views should have a role in policy making

• the nature and degree of the interaction between politics and science

• the place of moral repugnance and the “yuck” factor in science policy

• matters of public engagement and its appropriate role

Focus on Science & Health 14% Print Media • scientific success in research development

• stem cell research’s healthcare potential - i.e. cures for serious and high profile conditions (e.g. diabetes, Parkinson’s, Down Syndrome and cancer)

Issues Relating to the Supply of Embryos

13% Legal, Biomedical & Social Science

• whether donors should be compensated

• how the risks incurred by donors should be framed and addressed

• the importance and meaning of informed consent for gamete and embryo donation

• creation of embryos for research

• egg sharing arrangements

• ethical issues associated with asking for donation of fresh embryos for research

Debates re: Novel Technologies (hybrids, cloning and saviour siblings)a

12.6% Print Media • fears related to reproductive cloning

• confirmations of the Roman Catholic Church’s views regarding hESC research

• concerns related to hybrids and issues of ‘humanness’

• moral concerns re: saviour siblings

Non-embryonic Sources of Stem Cells (iPS cells)

10.9% All • celebrating fact that iPS cells do not involve human embryo destruction

• addressing potential anti-rejection and anticipated personalized medicine benefits of iPS cells

• ethical challenges associated with iPS cells - including concerns about informed consent and controlling their possible uses (e.g. the generation of gametes and other cloning mechanisms).

Jurisdictional Competition/ Forum Shopping

7% All • concerns about losing scientists to less restrictive jurisdictions (i.e. experiencing “brain drain”)

• concerns about countries falling behind other nations in scientific prowess because of restrictive policies

Intellectual Property Issues 6.7% Legal & Biomedical

• technical challenges associated with attaching patents to stem cell technologies

• ethical issues associated with patents in this area (e.g. moral concerns associated with linking patents to human embryonic stem cells)

• concerns that patents may impede research

• problems caused by ambiguities in current IP laws and practices

Need for Clear and Consistent Research Guidelines and Standards

6.7% Legal, Social Science & Biomedical

• general calls for international regulation, consensus and inter- (as well as intra-) jurisdictional consistency

• need for an international definition of bioethics

• current limitations in international regulatory and ethical guidelines addressing consent, prevention of commodification of human material and protection of women’s reproductive health

Stem Cell Rev and Rep (2009) 5:96–101 99

the embryo and little strong position taking on the topic. In other words, the view that human embryos have a moral status rendering research on them morally unacceptable was often simply recognized as one point of view, as opposed to being vigorously put forward as the appropriate position.

In addition, our results indicate that questions about the moral status of the embryo are currently sharing focus with many other diverse and complex issues. These findings echo results published in 2006 in relation to a study of public discourse surrounding California’s Proposition 71, wherein the investigators noted that “no single issue dominated the discourse” (Lysaght, Ankeny & Kerridge, 2006 at 116). While our study has clear limitations as it involved subjective content analysis of limited data sets, the focus of this exercise was on getting a sense of the current state of different forms of discourse surrounding stem cell research and of the role currently played by the moral status of the embryo in those discourses. We hope that the results of this review will present a good starting point for further exploration and discussion. In particular, an expanded examination of different sources of media in various

jurisdictions, and of other relevant forms of discourse, would facilitate potentially enlightening comparisons.

Our initial results confirm that stem cell research continues to be a complex topic which raises diverse and multifaceted issues in various forms of discourse including legal, social science, biomedical and print media. Given the plurality of issues that seem to be in play, our data also hint that while issues regarding the moral status of embryos remain relevant, the field is evolving and extending its consideration to current and emerging issues including patenting, policy approaches, procurement of embryos, stem cell tourism and new sources of stem cells, among others. Only time and further examination will determine which, if any, of these issues will capture the attention of policy makers. Ideally, commentators and decision makers will be wary of making assumptions regarding the relative impacts of these varied issues on the public sphere, and will adopt a broad, flexible and informed approach to policy making that accounts for the diversity of issues including, but certainly not limited to, the moral status of the embryo, reflected in current discourse. The situation revealed by this

Table 1 (continued)

Theme Frequency Types of discourse Examples:

• need for national policy consistency, particularly re: the sometimes conflicting/ inconsistent policies re: IVF and research involving human embryos

Research Funding Issues 5% Social Science, Biomedical & Print Media

• debates about the appropriateness of using public funds to support hESC research

• challenges associated with obtaining research funding

• general need for improved access to funding for stem cell research

Stem Cell Tourism 2.5% Print Media • risks and responses

Others All • legal issues associated with a right to live for embryos

• legal concerns regarding President Bush’s federal funding Directive re: stem cell research in the U.S.

• added pressure and risks of unethical practices or fraud associated with competition between both companies and nations for scientific success

• economic benefits associated with commercialization of stem cell research, in particular as motivation for state-sponsored stem cell research

• issues associated with advertising and false claims, primarily as related to stem cell treatments and therapies

• current gap between research and the clinic

• concerns about the ‘hand of Satan encouraging a “culture of death”’

• social justice and access issues associated with the expected success of stem cell therapies.

a It must be noted that the time frame of our sample overlapped with the period of time when the United Kingdom’s Human Fertilisation and Embryology Act’s amendments were being considered. As a result, many of these discussions occurred in response to and were reflective of the United Kingdom’s shifting policy situation

100 Stem Cell Rev and Rep (2009) 5:96–101

preliminary review suggests that the discourse surrounding stem cell research is increasingly nuanced and is reflective of a more general science policy question rather than a debate centered on questions of morality.

Acknowledgments This work was completed as part of the Canadian Stem Cell Network funded project, “The Stem Cell Research Environment: Drawing the Evidence and Experience Together”. Additional thanks go to all of the participants of the Lay of the Land workshop for their invaluable comments and advice, and to Erin Nelson and Michael McDonald for their comments on an earlier draft of this paper.

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  • Emerging...
    • Abstract
    • Introduction
    • Approach
    • Discussion
    • Conclusions
    • References

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adatti per visualizzare e stampare documenti aziendali in modo affidabile. 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De gemaakte PDF-documenten kunnen worden geopend met Acrobat en Adobe Reader 5.0 en hoger.) /NOR <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> /PTB 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>> >> setdistillerparams << /HWResolution [2400 2400] /PageSize [595.276 841.890] >> setpagedevice