This work was supported, in part, by a Stem Cell Network grant to Françoise Baylis and Jason Scott Robert and a CIHR grant to Françoise Baylis. We sincerely thank Alan Fine, Rich Campbell, Cynthia Cohen, and Tim Krahn for helpful comments on an earlier draft of this paper. Thanks are also owed to Tim Krahn for his research assistance. An earlier version of this paper was presented to the Department of Bioethics and the Novel Tech Ethics (...) research team. We thank the participants at each of these meetings for their helpful comments. (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)

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)

This book concerns the ethics of having children through adoption or technologically-assisted reproduction. Some people who choose between these methods struggle between them. Others do not agonize in this way, perhaps because they have a profound desire for a genetic link to the child(ren) they will parent and so prefer assisted reproduction, they view adoption as the only morally decent choice in an overcrowded world, or for some other reason. This book critically examines moral choices that involve each of these (...) ways of making or expanding families with children. The contributors discuss how adoption and assisted reproduction are morally distinct from one another, but also emphasize how they are morally similar, given that both are forms of family‐making. (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)

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)

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)

In this article, I argue that there is no compelling therapeutic ‘need’ for human nuclear genome transfer to prevent mitochondrial diseases caused by mtDNA mutations. At most there is a strong interest in this technology on the part of some women and couples at risk of having children with mitochondrial disease, and perhaps also a ‘want’ on the part of some researchers who see the technology as a useful precedent – one that provides them with ‘a quiet way station’ in (...) which to refine the micromanipulations techniques essential for other human germline interventions and human cloning. In advance of this argument, I review basic information about mitochondrial disease and novel genetic strategies to prevent the transmission of mutated mitochondria. Next, I address common features of contemporary debates and discussions about so-called mitochondrial replacement. First, I contest the cliché that science-and-technology is fast outpacing ethics. Second, I dispute the accuracy of the term ‘mitochondrial replacement’. Third, I provide a sustained critique of the purported ‘need’ for genetically-related children. In closing, I call into question the mainly liberal defense of human nuclear genome transfer. I suggest an alternative frame of reference that pays particular attention to issues of social justice. I conclude that our limited resources should be carefully expended in pursuit of the common good, which does not include pandering to acquired desires. (shrink)

Genetic relatedness poses significant challenges to traditional practices of medical ethics as concerns the biobanking of human biological samples. In this paper, we first outline the ethical challenges to informed consent and confidentiality as these apply to human biobanks, irrespective of the type of tissue being stored. We argue that the shared nature of genetic information has clear implications for informed consent, and the identifying nature of biological samples and information has clear implications for promises of confidentiality. Next, with regard (...) to the special case of biobanking human embryos and eggs, we consider issues arising from: first, the type of tissues being stored; second, the use to which these tissues are put; and third, how this plays out given the shared and identifying nature of these tissues. Specifically, we examine the differences between human bodily tissues and human reproductive tissues focusing on the assumed potential of the reproductive tissues and on the possible greater emotional attachment to these tissues because of their real and imagined kinship. For some donors there may be a sense of family connection with embryos and eggs they once thought of as ‘children-in-waiting’. Finally, we conclude by considering the implications for ethical practice. (shrink)

In Canada there is a growing demand for human eggs for reproductive purposes and currently demand exceeds supply. This is not surprising, as egg production and retrieval is onerous. It requires considerable time, effort, and energy and carries with it significant physical and psychological risks. In very general terms, one cycle of egg production and retrieval involves an estimated total of 56 hours for interviews, counseling, and medical procedures. The screening carries risks of unanticipated findings with severe consequences for insurability. (...) The daily hormone injections can be painful and uncomfortable, causing cramping, abdominal pain, nausea, vomiting, bloating, mood changes, and irritability. (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)

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.

In this article, we critically examine some of the ethical challenges and interpretive difficulties with possible future non-clinical applications of pediatric fMRI with a particular focus on applications in the classroom and the courtroom - two domains in which children come directly in contact with the state. We begin with a general overview of anticipated clinical and non-clinical applications of pediatric fMRI. This is followed by a detailed analysis of a range of ethical challenges and interpretive difficulties that trouble the (...) use of fMRI and are likely to be especially acute with non-clinical uses of the technology. We conclude that knowledge of these challenges and difficulties should influence policy decisions regarding the non-clinical uses of fMRI. Our aim is to encourage the development of future policies prescribing the responsible use of this neuroimaging technology as it develops both within and outside the clinical setting. (shrink)

The primary objective of The Health Care Ethics Con sultant is to focus attention on an immediate practical problem: the role and responsibilities, the education and training, and the certification and accreditation of health care ethics consultants. The principal questions addressed in this book include: Who should be considered health care ethics consultants? Whom should they advise? What should be their responsi bilities and what kind of training should they have? Should there be some kind of accreditation or certification program (...) to ensure that those who call themselves ethics consultants are in fact qualified to advise, consult, research, and write in health care ethics? The distinguished authors ofthese articles are persons with diverse backgrounds, interests, presumptions, and val ues. Not surprisingly, therefore, diverse responses have emerged to the questions posed. Though the book's chapters are individually authored, they are informed by the group discussions that went on during active workshop sessions, and by knowledge of the contributions of others. All of the chapters meaningfully represent their consensus. This is not to say that there were no disagreements regarding specific details, but rather that there were no fundamental objections on the book's basic content among a panel of authors who share basic premises regarding the role, responsibilities, education, and certifica tion of health care ethics consultants. (shrink)

We outline a number of ethical objections to genetic technologies aimed at enhancing human capacities and traits. We then argue that, despite the persuasiveness of some of these objections, they are insufficient to stop the development and use of genetic enhancement technologies. We contend that the inevitability of the technologies results from a particular guiding worldview of humans as masters of the human evolutionary future, and conclude that recognising this worldview points to new directions for ethical thinking about genetic enhancement (...) technologies. (shrink)

In January 2008, the Human Fertilisation and Embryology Authority issued two 1-year licenses for cytoplasmic hybrid embryo research. This article situates the HFEA's decision in its wider scientific and political context in which, until quite recently, the debate about human embryonic stem cell research has focused narrowly on the moral status of the developing human embryo. Next, ethical arguments against crossing species boundaries with humans are canvassed. Finally, a new argument about the risks of harm to women egg providers resulting (...) from research involving the creation of humanesque cytoplasmic hybrid embryos is elaborated. Taken together these ethical concerns about the moral status of the human embryo, about the ethics of crossing species boundaries with humans, and about the potential harms to women, provide good reason to eschew humanesque cytoplasmic hybrid embryo research in favor of less ethically controversial means to the laudable end of successful regenerative medicine. (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)

With the cure rate for many pediatric malignancies now between 70% and 90%, infertility becomes an increasingly important issue. Strategies for preserving fertility in girls and adolescent women occur in two distinct phases. The first phase includes oophorectomy and cryopreservation of ovarian cortex slices or individual oocytes; ultrasound-guided needle aspiration of oocytes, with or without in vitro maturation, followed by cryopreservation; and ovarian autografting to a distant site. The second phase occurs if the woman chooses to pursue pregnancy, and includes (...) IVM of the oocytes, followed by in vitro fertilization and transfer of any created embryos to the woman's uterus. For ovarian autografting, the woman would undergo menotropin ovarian stimulation and retrieval of matured oocytes. The ethical challenges with each of these phases are many of fertility preservation and include issues of informed choice. The lack of proven benefit with these strategies and the associated potential physical and psychological harms require careful attention to the key elements of informed choice, which include decisional capacity, disclosure, understanding and voluntariness, and to the benefits of in-depth counseling to promote free and informed choice at a time that is emotionally difficult for the decision makers. (shrink)

Beverly Beckham writes in the Boston Globe in praise of Lisa Genova’s Still Alice: “You have to get this book. … I couldn’t put it down. …” After I read Still Alice, a book of fiction about an accomplished Harvard professor with early-onset Alzheimer’s disease, I too wanted to tell everyone to get this book, but not because “I couldn’t put it down.” The first time I read it, I put it down several times to cry. It was too painful (...) to read in one stretch. Years back, my mother, Gloria Baylis,1 had been diagnosed with vascular dementia, and recently there had been findings suggestive of an atypical presentation of Alzheimer’s disease. The story of Alice Howland, the Alice of Still Alice, was both too... (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)

Giulia Cavaliere and César Palacios-González argue that lesbian couples should have access to human nuclear genome transfer so that both members of the couple can have a genetic link to the child they intend to parent. Their argument is grounded in an appeal to reproductive freedom. In this Response, I address a number of concerns with their argument. These concerns relate to nomenclature, treating like cases alike, genetic-relatedness and the limits of reproductive rights. On this last point, I insist that (...) we should not mistake ‘wants’ for ‘needs’ or ‘rights’. I maintain that there is no right to biological parenthood, there is no compelling need for human nuclear genome transfer to satisfy a so-called need for genetically-related children, and we ought not to pander to an acquired desire for genetic filiation. (shrink)

The institutional review board at the University of Nebraska Medical Center has a policy on contraceptive use in research that aims to balance the protection of potential fetuses from potential harm resulting from drug exposure in research against respect for the autonomy of women research participants. The policy draws on the U.S. Food and Drug Administration’s Use-in-Pregnancy categories in an innovative way. These categories are meant to help prevent the exposure of fetuses to harmful drugs when used for therapy by (...) pregnant women. The UNMC IRB policy applies the FDA categories as a guideline for mandating contraceptive use among research participants. Clinical trials of drugs in the different FDA categories require different levels of contraceptive protection under the UNMC IRB policy. Though we agree with the insight that contraceptive requirements in research could helpfully be guided by the current and future FDA Use-in-Pregnancy guidelines, we argue that in several places, the UNMC IRB policy unjustifiably prioritizes the protection of potential fetuses from potential harm at the expense of respecting the autonomy and well-being of women research participants. In response to the deficiencies we identify in the UNMC IRB policy, we formulate an alternative, ideal policy on contraceptive use in research. (shrink)

Throughout his remarkable and too‐brief career, Benjamin Freedman was concerned with the ethical standards of ethicists themselves. He worried that ethicists had been bought out, as he knew of none whose opposition to an employer had ever led to being fired. If we look today for what he sought—a bioethical hero—Benjy is himself still the preeminent example.

The dominant approach to conscience in contemporary bioethics presumes that conscience functions to promote personal moral integrity, and therefore presumes that the relevant values are inherently personal. This approach fails to demonstrate when and why claims of conscience should be taken seriously by others. I draw on Hannah Arendt’s deliberative model of conscience and Cheshire Calhoun’s social model of integrity to develop an alternative relational view of conscience—one that demonstrates that the relevant values are social as well as personal. I (...) show how the goal of improving ethical practice over time constrains which conscience claims should be taken seriously by others. (shrink)

Throughout his remarkable and too‐brief career, Benjamin Freedman was concerned with the ethical standards of ethicists themselves. He worried that ethicists had been bought out, as he knew of none whose opposition to an employer had ever led to being fired. If we look today for what he sought—a bioethical hero—Benjy is himself still the preeminent example.

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. (shrink)

In February 1999, I received a call from a lawyer at Hill Abra Dewar stating that she had instructions to retain my services as an expert witness in the case of Sawatzky v. Riverview Health Centre. She was representing the Manitoba League of Persons with Disabilities which had intervenor status.In Canada the admission of expert testimony depends upon the application of four criteria outlined in R. v. Mohan by Justice Sopinka. These criteria are: relevance; necessity in assisting the trier of (...) fact, the absence of any exclusionary rule; and a properly qualified expert. The lawyer believed that I could provide the court with relevant, reliable ethics testimony about surrogate decision-making and about medical futility-information that likely would be outside the experience and knowledge of the trier of fact. (shrink)

In February 1999, I received a call from a lawyer at Hill Abra Dewar stating that she had instructions to retain my services as an expert witness in the case of Sawatzky v. Riverview Health Centre. She was representing the Manitoba League of Persons with Disabilities which had intervenor status.In Canada the admission of expert testimony depends upon the application of four criteria outlined in R. v. Mohan by Justice Sopinka. These criteria are: relevance; necessity in assisting the trier of (...) fact, the absence of any exclusionary rule; and a properly qualified expert. The lawyer believed that I could provide the court with relevant, reliable ethics testimony about surrogate decision-making and about medical futility-information that likely would be outside the experience and knowledge of the trier of fact. (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)

ABSTRACTThis commentary responds to genetic testing of African ancestry through a series of personal narratives that reveal a complex, intimate, and individualised process of identity formation. The author discusses both how her family and others outside her family have fostered and challenged her sense of black identity. She concludes by maintaining that racial identity is not in the genes but in the world in which we live and the stories we construct and are able to maintain.

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)