The distinction between germline and somatic gene editing is fundamental to the ethics of human gene editing. Multiple conferences of scientists, ethicists, and policymakers, and multiple professional bodies, have called for moratoria on germline gene editing, and editing of human germline cells is considered to be an ethical “red line” that either never should be crossed, or should only be crossed with great caution and care. However, as research on germline gene editing has progressed, it has become clear that not (...) all germline interventions are alike, and that these differences make a significant moral difference, when it comes to ethical questions about research, regulation, clinical application, and medical justification. In this paper, I argue that, rather than lumping all germline interventions together, we should distinguish between revising, correcting, and transferring genes, and I assess the consequences of this move for the ethics of gene editing. (shrink)

Design of clinical trials for germline gene editing stretches current accepted standards for human subjects research. Among the challenges involved is a set of issues concerningintergenerational monitoring—long-term follow-up study of subjects and their descendants. Because changes made at the germline would be heritable, germline gene editing could have adverse effects on individuals’ health that can be passed on to future generations. Determining whether germline gene editing is safe and effective for clinical use thus may require intergenerational monitoring. The aim of (...) this paper is to identify and argue for the significance of a set of ethical issues raised by intergenerational monitoring in future clinical trials of germline gene editing. Though long-term, multigenerational follow-up study of this kind is not without precedent, intergenerational monitoring in this context raises unique ethical challenges, challenges that go beyond existing protocols and standards for human subjects research. These challenges will need to be addressed if clinical trials of germline gene editing are ever pursued. (shrink)

:Since the advent of recombinant DNA technology, expectations about the potential for altering genes and controlling our biology at the fundamental level have been sky high. These expectations have gone largely unfulfilled. But though the dream of being able to control our biology is still far off, gene editing research has made enormous strides toward potential clinical use. This paper argues that when it comes to determining permissible uses of gene editing in one important medical context—germline intervention in reproductive medicine—issues (...) about enhancement and eugenics are, for the foreseeable future, a red herring. Current translational goals for gene editing research involve a different kind of editing than would be required to achieve manipulation of complex traits such as intelligence, and there are more pressing questions that need attention if clinical use of gene editing in reproductive medicine ever becomes a possibility. (shrink)

In debates about the moral foundations of intellectual property, one very popular strand concerns the role of labor as a moral basis for intellectual property rights. This idea has a great deal of intuitive plausibility; but is there a way to make it philosophically precise? That is, does labor provide strong reasons to grant intellectual property rights to intellectual laborers? In this paper, I argue that the answer to that question is “yes”. I offer a new view, different from existing (...) labor theories of intellectual property, which I call the productive capacities view. This view gives us a way to make sense of the idea of labor as the basis for intellectual property rights, as well as a tool for critically evaluating existing intellectual property institutions. (shrink)

Volume 20, Issue 8, August 2020, Page W1-W3.

When developing computational models to analyze the tradeoffs between climate risk management strategies (i.e., mitigation, adaptation, or geoengineering), scientists make explicit and implicit decisions that are influenced by their beliefs, values and preferences. Model descriptions typically include only the explicit decisions and are silent on value judgments that may explain these decisions. Eliciting scientists’ mental models, a systematic approach to determining how they think about climate risk management, can help to gain a clearer understanding of their modeling decisions. In order (...) to identify and represent the role of values, beliefs and preferences on decisions, we used an augmented mental models research approach, namely values-informed mental models (ViMM). We conducted and qualitatively analyzed interviews with eleven climate risk management scientists. Our results suggest that these scientists use a similar decision framework to each other to think about modeling climate risk management tradeoffs, including eight specific decisions ranging from defining the model objectives to evaluating the model’s results. The influence of values on these decisions varied between our scientists and between the specific decisions. For instance, scientists invoked ethical values (e.g., concerns about human welfare) when defining objectives, but epistemic values (e.g., concerns about model consistency) were more influential when evaluating model results. ViMM can (i) enable insights that can inform the design of new computational models and (ii) make value judgments explicit and more inclusive of relevant values. This transparency can help model users to better discern the relevance of model results to their own decision framing and concerns. (shrink)

Though questions about whether gene editing should be done at all have dominated ethical discussion, a literature about how it can be done ethically has been growing. Work on responsible translational pathways for human germline gene editing has been criticized for focusing on the wrong questions. But questions about responsible translational pathways—questions about how gene editing could be done ethically—are, in an important sense, prior to questions about whether it is desirable and permissible. Asking “whether” questions about gene editing requires (...) a model of what responsible clinical use of gene editing would look like. (shrink)

Diagnostic testing can be used for many purposes, including testing to facilitate the clinical care of individual patients, testing as an inclusion criterion for clinical trial participation, and both passive and active surveillance testing of the general population in order to facilitate public health outcomes, such as the containment or mitigation of an infectious disease. As such, diagnostic testing presents us with ethical questions that are, in part, already addressed in the literature on clinical care as well as clinical research (...) (such as the rights of patients to refuse testing or treatment in the clinical setting or the rights of participants in randomized controlled trials to withdraw from the trial at any time). However, diagnostic testing, for the purpose of disease surveillance also raises ethical issues that we do not encounter in these settings, and thus have not been much discussed. In this paper we will be concerned with the similarities and differences between the ethical considerations in these three domains: clinical care, clinical research, and public health, as they relate to diagnostic testing specifically. Via an examination of the COVID-19 case we will show how an appeal to the concept of diagnostic justice helps us to make sense of the (at times competing) ethical considerations in these three domains. (shrink)

In this article, we describe a project in which philosophy, in combination with methods drawn from mental modeling, was used to structure dialogue among stakeholders in a region-scale climate adaptation process. The case study we discuss synthesizes the Toolbox dialogue method, a philosophically grounded approach to enhancing communication and collaboration in complex research and practice, with a mental modeling approach rooted in risk analysis, assessment, and communication to structure conversations among non-academic stakeholders who have a common interest in planning for (...) a sustainable future. We begin by describing the background of this project, including details about climate resiliency efforts in West Michigan and the Toolbox dialogue method, which was extended in this project from academic research into community organization involving the West Michigan Climate Resiliency Framework Initiative. This extension involved application of several methods, which are the focus of the Methods section. We then present and discuss preliminary results that suggest the potential for philosophical dialogue to enhance mutual understanding in complex community initiatives that focus on sustainable responses to climate change. Overall, the article supplies a detailed, instructive example of how philosophy can support policy-relevant decision-making processes at the community level. (shrink)

Despite what many critics see as an inability to deliver much in the way of therapeutic value (Hunter and Drazen 2019), genetics remains a bottomless source of fascination, trepidation, and reflect...

Global governance of emerging, disruptive biomedical technologies presents a multitude of ethical problems. The recent paper by Shoziet alraises some of these problems in the context of a discussion of what could be themostdisruptive (and most morally fraught) emerging biomedical technology—human germline genome editing. At the heart of their argument is the claim that, for something like gene editing, there is likely to be tension between the interests of specific states in crafting regulation for the technology, and disagreement about what (...) would be necessary to meet the requirements for responsible translation of gene editing into the clinic. This complicates hopes for a tidy, algorithmic process of crafting global governance via frameworks for regulation built around core ‘ethical values and principles’ (as they are called in the WHO Framework), and also forces us to confront deeper philosophical questions about biotechnology and global health. (shrink)

There is a burgeoning corner of the philosophical literature on germline gene editing (GGE) about whether GGE is “person-affecting” or “identify-affecting.” The distinction between actions that aff...

Bioethics, Volume 36, Issue 5, Page 608-609, June 2022.