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 reflection. Surely, one reason this is the case is that everyone understands that genetics is about more than just potential cures and therapies. Genetics is, and always has been, tied up with ideas about, in Christopher Boorse’s words, “physical or mental or moral excellence” (Boorse 1977, 572). The notion of “good genes” continues to be equated not just with what makes us healthy (sometimes despite ourselves), but—as Boorse noted was the tendency with the concept of health generally—with some form of excellence. Aristotle spells out the point directly, in fragments from a lost work, On Good Birth: “When, then, there has been one man of this kind in the family, a man so good that many generations inherit his goodness, the family is bound to be good. There will be many good men if the family is human, many good horses if it is equine, and so too with the other animals.” (F 94R) (Aristotle 1984). Anyone who has studied any philosophy knows that “good”, in the context of any Aristotelian ideas, is not a neutral term, whether used for people or for horses. The idea of “good” birth here means more than just “healthy,” and the ideas in this fragment about “good birth” would have been very familiar to Francis Galton and his fellow travelers. As geneticists are well aware, these ideas are part of the intellectual bedrock of human genetics, and the strategy of pretending that we can carry on with the science without addressing the way in which results are—accurately or inaccurately—connected in the popular imagination with ideas about “good birth” in all its myriad senses is a failure. This has been explicitly acknowledged by the American Society for Human Genetics (ASHG), who, in a recent statement, affirmed that “theories and understandings of human genetics have been used to feed and justify racism, eugenics, and other systemic forms of injustice.” (ASHG Board of Directors 2023, 375). But it is wrong to think, as the framing from the ASHG has it, that the flow of ideas is one way, from “theories and understandings of human genetics” to moral and political ideas. It is also the case that moral and political ideas motivate certain kinds of work and ideas about the human genome. Perhaps the best illustration is the contrasting research projects in mid-20th century genetics between those (such as Theodosius Dobzhansky) who saw the enormous intraspecific phenotypic diversity in humans as a source of genetic variability that could serve as the raw material for selection, and those who saw it as evidence we were packed full of maladaptive genotypes that required some “help” to winnow out (Roughgarden 2013). Genetics, in other words, does not deliver neutral results that then get (mis)interpreted in terms of our moral, political, and social commitments; rather, those commitments also influence what research questions we find relevant, what conditions medical genetics
Global governance of emerging, disruptive biomedical technologies presents a multitude of ethical problems. The recent paper by Shozi et al raises some of these problems in the context of a discussion of what could be the most disruptive (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.
. 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.
BioethicsVolume 36, Issue 5 p. 608-609 BOOK REVIEW The Genetic Lottery: Why DNA Matters for Social Equality Paige Harden, Kathryn Princeton: Princeton University Press, 2021. 320 pp. ISBN 9780691190808. $29.95 (Hardcover). Bryan Cwik, Corresponding Author Bryan Cwik bcwik@pdx.edu orcid.org/0000-0002-5570-3403 Department of Philosophy, Portland State University, Portland, Oregon, USA Correspondence Bryan Cwik, Department of Philosophy, Portland State University, 1721 SW Broadway, Cramer Hall, Suite 241, Portland, OR 97201, USA. Email: bcwik@pdx.eduSearch for more papers by this author Bryan Cwik, Corresponding Author Bryan Cwik bcwik@pdx.edu orcid.org/0000-0002-5570-3403 Department of Philosophy, Portland State University, Portland, Oregon, USA Correspondence Bryan Cwik, Department of Philosophy, Portland State University, 1721 SW Broadway, Cramer Hall, Suite 241, Portland, OR 97201, USA. Email: bcwik@pdx.eduSearch for more papers by this author First published: 18 April 2022 https://doi.org/10.1111/bioe.13031Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinked InRedditWechat No abstract is available for this article. Volume36, Issue5Special Issue: IAB 15th World CongressJune 2022Pages 608-609 RelatedInformation
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 affect the welfare of future persons, and those that determine which future persons exist at all, is due to Derek Parfit, and is the source of a major puzzle widely discussed in the practical and applied ethics literature on several issues (Boonin 2014). The major aim of Robert Sparrow’s (2022) “Would Genome Editing Harm or Benefit the Person Born as a Result?” is to argue that GGE would not be person-affecting; this is because, according to Sparrow, GGE would still involve selection of which embryos to transfer to initiate a pregnancy. According to a widespread assumed premise in this debate, selection of embryos is equivalent to a choice of which person, out of a set of possible persons, eventually comes to exist, and as such, it is identity-affecting. Sparrow sets his argument within the giant debate about potential use of GGE as a tool for enhancement. He justifies this briefly toward the beginning of the paper. My concern here is with one of Sparrow’s reasons for focusing on enhancement. Sparrow rejects the potential for GGE to be used as a therapeutic intervention; since “... the therapeutic case for germline genome editing is weak,” he assumes that GGE will “primarily be used for... enhancement.” This seems to back up a sentiment about GGE that is in the air— namely, that any talk about its use for therapeutic purposes is really a kind of normative Trojan Horse, to speed the acceptance of GGE for enhancement (and, indeed, Sparrow seems to endorse this idea, when he says therapeutic use of GGE “...undoubtedly has utility for garnering public support for genome editing”). Sparrow’s reasoning in favor of this rejection is— apologies for the blunt statement, but sometimes bluntness is called for—flat out wrong. I’m not going to argue here that Sparrow is wrong because GGE really does have therapeutic value; rather, I think it’s an open question, as of now, whether it could, and there is a significant philosophical problem about whether GGE has any therapeutic utility. To be fair, Sparrow does not give a fully developed argument that there is a “weak” case for therapeutic use of GGE; his brief statement in support of this assumption repeats three widespread claims in the literature on GGE. The first is that GGE offers no clinical benefit over and above existing assisted reproductive technologies (ARTs) for dealing with heritable genetic disorders; preimplantation genetic diagnosis (PGD) is an already available means to accomplish the same goal (of having a disease-free child). Second, in cases where PGD won’t work, gamete donation is also available. The third reason Sparrow offers needs to be cited au naturel:
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.
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.
Purpose of Review Continued development of gene editing techniques has raised the real possibility of clinical application of germline gene editing. These results, as well as reports of an unethical experiment which resulted in the birth of at least two children from edited embryos in 2018, have highlighted the urgency and importance of ethical issues about translational pathways for editing of human germline cells. Charting responsible translational pathways for germline gene editing requires tackling some significant and complex ethical issues. Recent Findings A literature on development of clinical applications of germline gene editing is emerging, and several key ethical issues are coming into focus as major challenges for responsible translational pathways. Summary Potential clinical utility, clinical justification, and human subjects research for germline gene editing raise outstanding ethical questions. Work on these questions will help provide guidance to researchers and clinicians and direct translational projects toward justifiable applications.
In September 2020, a detailed report on Heritable Human Genome Editing was published. The report offers a translational pathway for the limited approval of germline editing under limited circumstances and assuming various criteria have been met. In this perspective, some three dozen experts from the fields of genome editing, medicine, bioethics, law, and related fields offer their candid reactions to the National Academies/Royal Society report, highlighting areas of support, omissions, disagreements, and priorities moving forward.
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.
Imagine it is 1932, and you walk into your office one morning and open your (physical, print) copy of Nature to see an article by a British physicist, James Chadwick, entitled “Possible Existence of a Neutron” (Chadwick 1932). You would be forgiven if you did not immediately consider the possibility that, 13 years later, the science reported in Chadwick’s note would be used to develop a nightmarishly destructive weapon, that this weapon would be used twice in the closing hours of the most destructive war in human history, and that the horror of its mere presence would fundamentally reshape the world and the relations between states indefinitely. Looking back on that moment from 1945 you would see that day in 1932 differently–you would see that a number of possible futures opened up from that moment, and the path we all traced through that space of possibilities was determined not just by the possible applications of the science but by a great deal of exogenous factors. You may wonder if we could have kept some of those possible futures open and foreclosed others if you had recognized the gravity of what you were reading in 1932. It is maybe a little overdramatic and overwrought to compare gene editing to the development of nuclear energy, but like nuclear energy gene editing is a technology with enormous power and possibility. In a comment published late last year, Jennifer Doudna, one of the co-discoverers of the CRISPR gene editing platform, wrote that “... the genome editing toolbox will soon make it possible to introduce virtually any change to any genome with precision” (Doudna 2019, 777). We are no longer in a world where it is possible to be naïve about the development of technologies that can do things like “introduce virtually any change to any genome with precision.” We know that there are multiple different paths that we could take through this space of possibilities, and that the factors affecting which way things will go are multifarious. In the near century since the discovery of nuclear fission, we have learned not to take for granted that technologies will develop the way we expect and want them to. We’ve also learned not to assume that development can be insulated from the larger forces that shape the world. We are currently living through an unprecedented global health emergency that has, among its many other effects, made the future a great deal more uncertain and unstable. Who knows what futures for revolutionary biomedical tools will be opened up by the changes currently being wrought in the world. The aim of “Revising, Correcting, and Transferring Genes” (Cwik 2020) is to contribute to the large but still emerging literature on what we can call “anticipatory governance” (Scott and Selin 2019) for germline gene editing. Or to put it differently–the project of ensuring responsible translation and application of this powerful new biomedical technology. The impetus for the paper is the idea that developments in research have made a staple of the existing anticipatory governance framework for gene editing–the somatic/germline distinction–obsolete, and a way of sorting translational projects with more resolution is necessary to get an accurate map of the ethical terrain. Most of the open peer commentaries (OPCs) seem to agree that it is time to retire the somatic/ germline distinction. Where we disagree is what should (or could) take its place. There are a number of serious and thoughtprovoking objections in the set of OPCs to various aspects of the paper, including a number of claims the paper contains various technical errors and infelicities (see especially the OPCs from Gray (2020), Lewens (2020), and Wrigley and Newton (2020)). I’m not
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 concerning intergenerational 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.
Since the advent of recombinant DNA technology, expectations (and trepidations) 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 (or nightmare) 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 (and unresolved) questions that need attention if clinical use of gene editing in reproductive medicine ever becomes a possibility.
Individuals use values to frame their beliefs and simplify their understanding when confronted with complex and uncertain situations. The high complexity and deep uncertainty involved in climate risk management (CRM) lead to individuals’ values likely being coupled to and contributing to their understanding of specific climate risk factors and management strategies. Most mental model approaches, however, which are commonly used to inform our understanding of people's beliefs, ignore values. In response, we developed a “Values‐informed Mental Model” research approach, or ViMM, to elicit individuals’ values alongside their beliefs and determine which values people use to understand and assess specific climate risk factors and CRM strategies. Our results show that participants consistently used one of three values to frame their understanding of risk factors and CRM strategies in New Orleans: (1) fostering a healthy economy, wealth, and job creation, (2) protecting and promoting healthy ecosystems and biodiversity, and (3) preserving New Orleans’ unique culture, traditions, and historically significant neighborhoods. While the first value frame is common in analyses of CRM strategies, the latter two are often ignored, despite their mirroring commonly accepted pillars of sustainability. Other values like distributive justice and fairness were prioritized differently depending on the risk factor or strategy being discussed. These results suggest that the ViMM method could be a critical first step in CRM decision‐support processes and may encourage adoption of CRM strategies more in line with stakeholders’ values.
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. (C) 2017 Elsevier Ltd. All rights reserved.
Interview with Dr. George Church on recent advances in human germline repair and movement toward clinical applications. (07:01)Download With gene-editing technology advancing rapidly, it is important to consider the ethical issues it raises for research, including those related to intergenerational monitoring — long-term follow-up monitoring of not just trial participants, but also their descendants.
Journal of Political PhilosophyVolume 24, Issue 4 p. 470-486 Original Article Property Rights in Non-rival Goods† Bryan Cwik, Bryan Cwik Philosophy, Indiana University of PennsylvaniaSearch for more papers by this author Bryan Cwik, Bryan Cwik Philosophy, Indiana University of PennsylvaniaSearch for more papers by this author First published: 10 February 2016 https://doi.org/10.1111/jopp.12090Citations: 5 † Thanks to Loren Lomasky, John Arras, Sahar Akhtar, Julia Mahoney, Bill Glod, and two anonymous referees for The Journal of Political Philosophy for comments on drafts of this paper. I also benefitted greatly from a conversation about this article with Amanda Greene, and from conversations about (and live demonstrations of) sampling with Bill Hasselberger. Versions of this article were presented at San Jose State University; Indiana University of Pennsylvania; the University of Arkansas; a Philosophy, Politics, and Economics colloquium at George Mason University; and a “Philosophy After Dark” workshop at the University of Virginia. Thanks to audiences at those talks for many helpful remarks. Work on this article was supported in part by a Summer Graduate Research Fellowship from the Institute for Humane Studies. Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat Citing Literature Volume24, Issue4December 2016Pages 470-486 RelatedInformation
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.