Until now, philosophical debate about human embryonic stem cell (hESC) research has largely been limited to its ethical dimensions and implications. Although the importance and urgency of these ethical debates should not be underestimated, the almost undivided attention that mainstream and feminist philosophers have paid to the ethical dimensions of hESC research suggests that the only philosophically interesting questions and concerns about it are by and large ethical in nature. My argument goes some distance to challenge the assumption that ethical (...) considerations alone must be foregrounded in philosophical discussions about hESC research by introducing a critical stance on the epistemological and ontological assumptions that underlie and condition it. A central aim of the paper is to show how Foucault's insights into knowledge-power, taken in combination with Hacking's claims about styles of reasoning, can make these assumptions evident, as well as cast light on their potentially deleterious implications for disabled people. Arguing in this way also enables me to draw out constitutive effects of research on stem cells, that is, to indicate how the discursive practices surrounding research on stem cells, as well as the technology itself, contribute to the constitution of impairment. (shrink)

In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which (...) focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision. (shrink)

This dissertation contributes to the development of philosophy of disability by drawing on disability studies, feminist philosophy, phenomenology, and philosophy of biology in order to contest epistemic and ontological assumptions about disability within biomedical ethics as well as within philosophical work on the body, demonstrating how philosophical inquiry is radically transformed when experiences of disability are taken seriously. In the first two chapters, I focus on epistemological and ontological concerns surrounding disability within biomedical ethics. Although disabled people and their advocates (...) have been quite vocal regarding their views on disability and in critiquing bioethicists’ approaches to issues that affect them, the interests, knowledge, and experiences of disabled people have had minimal impact on discussions within biomedical ethics textbooks. The risks of making problematic assumptions about disability are high within this subfield insofar as bioethicists impact practices within medical facilities, public policy, and, through student engagement with their texts in biomedical ethics courses, the views of potential health care professionals. All of these, in turn, affect the care provided to disabled people and potential/actual parents of disabled children. Chapter three raises ontological issues related to disability theory, examining the role of the impairment/disability distinction in framing discussions of the body as well as the status of experience. I discuss two approaches to incorporating subjective experiences of the body in disability, arguing that neither is sufficient. I examine debates within feminist theory on questions related to experience. I argue that a feminist phenomenological approach that builds on Merleau-Ponty’s work offers the best way to address bodily experiences in disability theory. The assumptions that disability theorists and Merleau-Ponty make about disability are often at odds. Chapter four points out the ableism in Merleau-Ponty’s use of a case study and considers some of the oversights within Phenomenology of Perception. In spite of my critique, I argue that his approach to phenomenology—with appropriate modifications—is useful not only for theorizing the experiences of disabled people but also for addressing other types of marginalized embodiment. Chapter five applies this method to body integrity identity disorder (BIID), arguing that combining Merleau-Ponty’s insights with those of disability theory allows us to address lived experiences of BIID and to identify assumptions about disability within research on this condition. (shrink)

Abstract It is common practice to regard participants in assisted and collaborative reproduction (gamete donors, embryologists, fertility doctors, etc.) as simply providing a desired biological product or medical service. These agents are not procreators in the ordinary sense, nor do they stand in any kind of meaningful parental relation to the resulting offspring. This paper challenges the common view by defending a principle of procreative responsibility and then demonstrating that this standard applies as much to those who provide reproductive assistance (...) in the form of medical services or gametes, as it does to coital reproducers or intending parents. Drawing on vocabulary from the common law tradition, I suggest that it may be helpful to refer to the various participants in assisted and collaborative reproduction (ACR) as accessories to procreation. Referring to the participants in ACR as accessories to procreation highlights the fact that these agents are not just providing medical services or products. They are participating in a supply chain designed to bring about new persons. I conclude by arguing that regulative standards in the fertility industry should be structured such that they permit, facilitate, and encourage agents to satisfy the requirements of procreative responsibility. Content Type Journal Article Pages 1-16 DOI 10.1007/s10677-011-9330-7 Authors Melissa Seymour Fahmy, Department of Philosophy, University of Georgia, 107 Peabody Hall, Athens, GA 30602, USA Journal Ethical Theory and Moral Practice Online ISSN 1572-8447 Print ISSN 1386-2820. (shrink)

The American Journal of Bioethics, Volume 12, Issue 4, Page 21-22, April 2012.

Mitochondrial replacement techniques are designed to allow couples to have children without passing on mitochondrial diseases. Recently, Giulia Cavaliere and César Palacios-González argued that prospective parents have the right to use MRTs to pursue genetic relatedness, such that some same-sex couples and/or polygamous triads could use the process to impart genetic relatedness between a child and more of its caregivers. Although MRTs carry medical risks, Cavaliere and Palacios-González contend that because MRTs are identity-affecting, they do not cause harm to an (...) existing human being, and our intuitions otherwise arise from the non-identity problem. Here, I review several attempts to address the non-identity problem, and propose a solution to the problem. Furthermore, I argue that regardless of one’s stance on whether MRTs are identity-affecting, the use of MRTs to pursue genetic relatedness alone falls outside the scope of the medical profession, as they involve substantive medical risk for no medical benefit. (shrink)

In debates about human cloning, a distinction is frequently drawn between therapeutic and reproductive uses of the technology. Naturally enough, this distinction influences the way that the law is framed. The general consensus is that therapeutic cloning is less morally problematic than reproductive cloning — one can hold this position while holding that both are morally unacceptable — and the law frequently leaves the way open for some cloning for the sake of research into new therapeutic techniques while banning it (...) for reproductive purposes. We claim that the position adopted by the law has things the wrong way around: if we accept a moral distinction between therapeutic and reproductive cloning, there are actually more reasons to be morally worried about therapeutic cloning than about reproductive cloning. If cloning is the proper object of legal scrutiny, then, we ought to make sure that we are scrutinising the right kind of clone. (shrink)

Some of the concerns that have been raised in connection to the use of advance directives are of the epistemic variety. Such concerns highlight the possibility that adhering to an advance directive may conflict with what the author of the directive actually wants at the time of treatment. However, at least one objection to the employment of advance directives is metaphysical in nature. The objection to be discussed here, first formulated by Rebecca Dresser and labeled by Allen Buchanan as the (...) slavery argument and David DeGrazia the someone else problem, aims to undermine the legitimacy of certain uses of advance directives by concluding that such uses rest upon an incorrect assumption about the identity over time of those ostensibly governed by the directives. There have been numerous attempts to respond to this objection. This paper aims to assess two strategies that have been pursued to cope with the problem. (shrink)

In search of a potential problem with cloning, I investigate the phenomenon of telomere shortening which is caused by cell replication; clones created from somatic cells will have shortened telomeres and therefore reach a state of senescence more rapidly. While genetic intervention might fix this problem at some point in the future, I ask whether, absent technological advances, this biological phenomenon undermines the moral permissibility of cloning.

ZusammenfassungWie ist die Auswahl zukünftiger Kinder in moralischer Hinsicht zu beurteilen? Der Beitrag untersucht diese Frage auf der Basis eines liberalen Prinzips der reproduktiven Freiheit, welches Handlungsspielräume und Privatsphäre in Fragen der Fortpflanzung verteidigt, wenn nicht gewichtige moralische Gründe aufgezeigt werden können, welche den Handlungen der beteiligten Personen Grenzen setzen. Er beschränkt sich auf die negative Auswahl, d. h. die Auswahl von gesunden Kindern anstelle von zukünftigen Kindern mit Behinderung oder gesundheitlicher Beeinträchtigung. Erörtert werden selektionsbefürwortende Überlegungen, welche das Wohlergehen des (...) zukünftigen Kindes in den Fokus rücken, und zwei grundsätzlich selektionskritische Argumente. Das erste verweist auf parentale Tugenden, welche mit der Auswahl zukünftiger Kinder unvereinbar wären. Bei dem zweiten handelt es sich um den Einwand der Diskriminierung von Menschen mit Behinderung. Das Ergebnis der Diskussion ist, dass es zukünftigen Eltern in den meisten Fällen freisteht, die Entscheidung über die Auswahl ihrer Kinder im Licht ihrer Ziele und Werte zu treffen. (shrink)