This paper critically engages with how life not worth living (LNWL) and cognate concepts are used in the field of beginning-of-life bioethics as the basis of arguments for morally requiring the application of preimplantation genetic diagnosis (PGD) and/or germline genome editing (GGE). It is argued that an objective conceptualization of LNWL is largely too unreliable in beginning-of-life cases for deriving decisive normative reasons that would constitute a moral duty on the part of intending parents. Subjective frameworks are found to be (...) more suitable to determine LNWL, but they are not accessible in beginning-of-life cases because there is no subject yet. Conceptual and sociopolitical problems are additionally pointed out regarding the common usage of clear case exemplars. The paper concludes that a moral requirement for the usage of PGD and GGE cannot be derived from the conceptual base of LNWL, as strong reasons that can be reliably determined are required to limit reproductive freedom on moral grounds. Educated predictions on prospective well-being might still be useful regarding the determination of moral permissibility of PGD and/or GGE. It is suggested that due to the high significance of subjective experience in the normativity of beginning-of-life bioethics, the discipline is called to more actively realize the inclusion of people with disabilities. This regards for instance research design, citation practices, and language choices to increase the accessibility of societal debates on the reproductive ethics of genetic technologies. (shrink)

Commentary on Rob Sparrow’s (2022) target article, “Human Germline Genome Editing: On the Nature of Our Reasons to Genome Edit,” should consider the collection of articles Sparrow has authored on g...

Hastings Center Report, Volume 52, Issue 3, Page 37-48, May–June 2022.

This paper has two goals. The first is to argue that the field of bioethics in general and the literature on ideal vs. nonideal theory in particular has underemphasized a primary problem for normative theorizing: the role of conditioning principles. I define these as principles that implicitly or explicitly ground, limit, or otherwise determine the construction and function of other principles, and, as a result, profoundly impact concept formation, perception, judgment, and action, et al. The second is to demonstrate that (...) ableism is one such conditioning principle and that it undermines the field of bioethics and the practice of biomedicine from achieving the aim of justice as fairness. After briefly addressing the history and critiques of principlism in bioethics, I lay out and defend my account of conditioning principles. I then argue that ableism is one such principle and demonstrate it at work through an analysis of a storied debate between Eva Kittay, Peter Singer, and Jeff McMahan. In conclusion, I contend that the ethical and philosophical dangers of conditioning principles are too easily exacerbated by ideal theory frameworks, and I do so by demonstrating how they are especially liable to generate epistemic injustice, especially contributory and hermeneutical injustice. (shrink)

This paper explores the relationship between eugenics, disability, and dehumanization, with a focus on forms of eugenics beyond Nazi eugenics.

I have at least four close friends who seem to be ideal qualified recipients of WET. My friends have a variety of eyes: some prosthetic, some wandering, some misaligned, some absent, some shrouded...

An attempt to reduce disability discrimination can do more harm than the ostensible discrimination itself. Such is the case with Shavelson et al.’s (2023) argument for equal access to medical aid i...

Bioethics has increasingly become a standard part of medical school education and the training of healthcare professionals more generally. This is a promising development, as it has the potential to help future practitioners become more attentive to moral concerns and, perhaps, better moral reasoners. At the same time, there is growing recognition within bioethics that nonideal theory can play an important role in formulating normative recommendations. In this chapter we discuss what this shift toward nonideal theory means for ethical curricula (...) within healthcare education. In particular, we contend that more attention to the particularities of historical and social context needs to be incorporated into bioethics training. To make this argument, we focus on two examples: teaching units on race and medicine and those that focus on stigma and coercion in mental health. For both, we show how a pedagogical approach in which educators focus on social injustice could influence how practitioners engage in ethics in the clinic. This chapter, then, demonstrates what a commitment to nonideal theory can mean practically when it comes to bioethics education. (shrink)

The possibility of editing the genomes of human embryos has generated significant discussion and interest as a matter of science and ethics. While it holds significant promise to prevent or treat disease, research on and potential clinical applications of human embryo editing also raise ethical, regulatory, and safety concerns. This systematic review included 223 publications to identify the ethical arguments, reasons, and concerns that have been offered for and against the editing of human embryos using CRISPR-Cas9 technology. We identified six (...) major themes: risk/harm; potential benefit; oversight; informed consent; justice, equity, and other social considerations; and eugenics. We explore these themes and provide an overview and analysis of the critical points in the current literature. (shrink)