Abstract This article explores the notion of the dislocated self following deep brain stimulation (DBS) and concludes that when personal identity is understood in dynamic, narrative, and relational terms, the claim that DBS is a threat to personal identity is deeply problematic. While DBS may result in profound changes in behaviour, mood and cognition (characteristics closely linked to personality), it is not helpful to characterize DBS as threatening to personal identity insofar as this claim is either false, misdirected or trivially (...) true. The claim is false insofar as it misunderstands the dynamic nature of identity formation. The claim is misdirected at DBS insofar as the real threat to personal identity is the discriminatory attitudes of others towards persons with motor and other disabilities. The claim is trivially true insofar as any dramatic event or experience integrated into one’s identity-constituting narrative could then potentially be described as threatening. From the perspective of relational personal identity, when DBS dramatically disrupts the narrative flow, this disruption is best examined through the lens of agency. For illustrative purposes, the focus is on DBS for the treatment of Parkinson’s disease. Content Type Journal Article Category Original Paper Pages 1-14 DOI 10.1007/s12152-011-9137-1 Authors Françoise Baylis, Faculty of Medicine, Novel Tech Ethics, Dalhousie University, 1379 Seymour Street, P.O. Box 15000, Halifax, Nova Scotia, Canada B3H 4R2 Journal Neuroethics Online ISSN 1874-5504 Print ISSN 1874-5490. (shrink)
In this paper, we provide as accurate a picture as possible of transnational trade in human eggs involving Canadians. We explain the legal status in Canada, and call for reform in the regulation, of such trade.
Geron recently announced that it had begun enrolling patients in the world's first-in-human clinical trial involving cells derived from human embryonic stem cells (hESCs). This trial raises important questions regarding the future of hESC-based therapies, especially in spinal cord injury (SCI) patients. We address some safety and efficacy concerns with this research, as well as the ethics of fair subject selection. We consider other populations that might be better for this research: chronic complete SCI patients for a safety trial, subacute (...) incomplete SCI patients for an efficacy trial, and perhaps primary progressive multiple sclerosis (MS) patients for a combined safety and efficacy trial. (shrink)
Public attention on embryo research has never been greater. Modern reproductive medicine technology and the use of embryos to generate stem cells ensure that this will continue to be a topic of debate and research across many disciplines. This multidisciplinary book explores the concept of a 'healthy' embryo, its implications on the health of children and adults, and how perceptions of what constitutes child and adult health influence the concept of embryo 'health'. The concept of human embryo health is considered (...) from preconception to pre-implantation genetic diagnosis to recent foetal surgical approaches. Burgeoning capacities in both genetic and reproductive science and their clinical implications have catalysed the necessity to explore the concept of a 'healthy' embryo. The authors are from five countries and 13 disciplines in the social sciences, humanities, biological sciences and medicine, ensuring that the book has a broad coverage and approach. (shrink)
In 2004 and 2005, Woo-Suk Hwang achieved international stardom with publications in Science reporting on successful research involving the creation of stem cells from cloned human embryos. The wonder and success all began to unravel, however, when serious ethical concerns were raised about the source of the eggs for this research. When the egg scandal had completely unfolded, it turned out that many of the women who provided eggs for stem cell research had not provided valid consents and that nearly (...) 75% of the women egg providers had received cash or in-kind payments. Among those who did not receive direct benefits, some cited patriotism as their reason for participating in embryonic stem cell research, hence the question “for love or money?”—namely, patriotism versus payment. This paper summarizes the Hwang debacle with particular attention to the egg scandal and ends with some preliminary thoughts on patriotism as a motive for research participation. (shrink)
In September 2007, the Human Fertilisation and Embryology Authority (HFEA) in the United Kingdom concluded that "there is no fundamental reason to prevent cytoplasmic hybrid research . . . this area of research can, with caution and careful scrutiny, be permitted." Later, in January 2008, HFEA issued two research licenses to create humanesque cytoplasmic hybrid embryos from which stem cells could be derived. This article critically examines the public consultation process that preceded these decisions, concluding that the process was flawed (...) and demonstrating how the HFEA documents summarizing the findings of the public consultation process misrepresent the public's contributions to this policymaking initiative. (shrink)
This article is the first in a two-part review of policy design for human embryo research in Canada. In this article we explain how this area of research is circumscribed by law promulgated by the federal Parliament (the Assisted Human Reproduction Act ) and by guidelines issued by the Tri-Agencies (the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans and Updated Guidelines for Human Pluripotent Stem Cell Research ). In so doing, we provide the first comprehensive account of the (...) rules currently governing human embryo research in Canada. In this article we also provide a chronological description of relevant policy initiatives and outcomes related to these policy instruments over the past 20 years, with particular attention to public involvement in policy design. This sets the stage for the second article (scheduled to appear in vol. 6 issue 3) in which we critically analyse the history of policy design for human embryo research in Canada, applying a typology of modes of public consultation developed by Eric Montpetit. Our goal is to carefully explain the various episodes of policy development and their corresponding outcomes, in order to more effectively address emerging questions about the legitimacy of future policy initiatives for human embryo research in Canada. (shrink)
This article is the second in a two-part review of policy design for human embryo research in Canada. In the first article in 6(1) of the JBI , we explain how this area of research is circumscribed by law promulgated by the federal Parliament and by guidelines adopted by the Tri-Agencies, and we provide a chronological description of relevant policy initiatives and outcomes related to these two policy instruments, with particular attention to the repeated efforts at public consultation. This second (...) article analyses the history of policy design for human embryo research in Canada, applying a typology of modes of public consultation developed by Eric Montpetit to better understand the various episodes of policy design and their corresponding outcomes. On this basis, we suggest that the degree to which the views of Canadian residents and citizens on human embryo research have been solicited as part of the policy-making process has diminished significantly over time. We also suggest that this diminished participation is likely to continue given the presence of powerful interest groups and policy communities “speaking for” Canadians. This raises interesting questions about the legitimacy of future policy initiatives for human embryo research in Canada. (shrink)
oise Baylis, 1234 Le Marchant Street, Halifax, Nova Scotia, Canada B3H 3P7. Tel.: (902)-494–2873; Fax: (902)-494-2924; Email: francoise.baylis{at}dal.ca ' + u + '@' + d + ' '//--> . Abstract Recently, there has been a growing interest in public health and public health ethics. Much of this interest has been tied to efforts to draw up national and international plans to deal with a global pandemic. It is common for these plans to state the importance of drawing upon a well-developed (...) ethics framework and we argue that this framework should reflect the values and insights of feminist relational theory. More specifically, we argue that pandemic planning must be squarely situated in the larger realm of public health and that an ethics framework for public health will be one that recognizes the need to pay particular attention to the vulnerability of subpopulations lacking in social and economic power. We propose an ethics framework for public health that builds on the notions of relational personhood (including relational autonomy and social justice) and relational solidarity. In this way, we aim for a public health ethics that, as appropriate, promotes the public interest and the common good. CiteULike Connotea Del.icio.us What's this? (shrink)
Now that stem cell scientists are clamouring for human eggs for cloning-based stem cell research, there is vigorous debate about the ethics of paying women for their eggs. Generally speaking, some claim that women should be paid a fair wage for their reproductive labour or tissues, while others argue against the further commodification of reproductive labour or tissues and worry about voluntariness among potential egg providers. Siding mainly with those who believe that women should be financially compensated for providing eggs (...) for research, the new stem cell guidelines of the International Society for Stem Cell Research (ISSCR) legitimise both reimbursement of direct expenses and financial compensation for many women who supply eggs for research. In this paper, the authors do not attempt to resolve the thorny issue of whether payment for eggs used in human embryonic stem cell research is ethically legitimate. Rather, they want to show specifically that the ISSCR recommended payment practices are deeply flawed and, more generally, that all payment schemes that aim to avoid undue inducement of women risk the global exploitation of economically disadvantaged women. (shrink)
Some stem cell researchers believe that it is easier to derive human embryonic stem cells from fresh rather than frozen embryos and they have had in vitro fertilization (IVF) clinicians invite their infertility patients to donate their fresh embryos for research use. These embryos include those that are deemed 'suitable for transfer' (i.e. to the woman's uterus) and those deemed unsuitable in this regard. This paper focuses on fresh embryos deemed suitable for transfer - hereafter 'fresh embryos'- which IVF patients (...) have good reason not to donate. We explain why donating them to research is not in the self-interests specifically of female IVF patients. Next, we consider the other-regarding interests of these patients and conclude that while fresh embryo donation may serve those interests, it does so at unnecessary cost to patients' self-interests. Lastly, we review some of the potential barriers to the autonomous donation of fresh embryos to research and highlight the risk that female IVF patients invited to donate these embryos will misunderstand key aspects of the donation decision, be coerced to donate, or be exploited in the consent process. On the basis of our analysis, we conclude that patients should not be asked to donate their fresh embryos to stem cell research. (shrink)
: The feminist literature against the commodification of embryos in human embryo research includes an argument to the effect that embryos are "intimately connected" to persons, or morally inalienable from them. We explore why embryos might be inalienable to persons and why feminists might find this view appealing. But, ultimately, as feminists, we reject this view because it is inconsistent with full respect for women's reproductive autonomy and with a feminist conception of persons as relational, embodied beings. Overall, feminists should (...) avoid claims about embryos' being inalienable to persons in arguments for or against the commodification of human embryos. (shrink)
This paper critically examines the biology of species identity and the morality of crossing species boundaries in the context of emerging research that involves combining human and nonhuman animals at the genetic or cellular level. We begin with the notion of species identity, particularly focusing on the ostensible fixity of species boundaries, and we explore the general biological and philosophical problem of defining species. Against this backdrop, we survey and criticize earlier attempts to forbid crossing species boundaries in the creation (...) of novel beings. We do not attempt to establish the immorality of crossing species boundaries, but we conclude with some thoughts about such crossings, alluding to the notion of moral confusion regarding social and ethical obligations to novel interspecies beings. (shrink)
The current debate on the ethics of cloning humans is both uninspired and uninspiring. In large measure this is because of mistakes that permeate the discourse, including the mistake of thinking that cloning technology is strictly a reproductive technology when it is used to create whole beings. As a result, the challenge this technology represents regarding our understanding of ourselves and the species to which we belong typically is inappropriately downplayed or exaggerated. This has meant that important (albeit disquieting) societal (...) issues and species-type concerns have not been fully explored. This paper, intended as a corrective, suggests that we take an alternate view of human cloning as both an enhancement and a reproductive technology. This proposed shift in the framework for analysis counters the current narrow framing of the issues and introduces new questions about the prospect of modifying the species. (shrink)
In philosophy, intelligence is less important than character, or so Wittgenstein once argued. In this paper, in a similar vein, I suggest that in health care ethics consultation character is of preeminent importance. I suggest that the activity of ethics consultation can be understood as "training in virtue," and what distinguishes the good health care ethics consultant from his/her average colleague are differences in traits of character. The underlying assumption is that one's use of knowledge and abilities are ultimately a (...) function of who one is and how one perceives and confronts situations of moral uncertainty and conflict. In discussing the original case presented by Mark Bliton, I focus on the virtues of wisdom, justice, courage, compassion and humility. (shrink)
