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Scholars have long speculated about what a future affected bygeneediting technologies might hold. This article enters current debates over the future ofgeneediting and the place of disability within it. Specifically, I evaluate contemporary utopian thinking aboutgeneediting found in two different schools of thought: transhumanism and critical disability studies, ultimately judging the latter to be richer and more politically promising than the former. If we take it as our goal (...) to protect and promote future people’s autonomy interests, I argue that current political efforts should be directed toward modifying ableist environments rather than employing genetic technologies to avoid disability or enhance capacity. The article concludes by drawing from disability justice scholarship to make the case that the “right to an open future” should be understood as the “right to an accessible future,” one wherein society is “open” to people with diverse genetic traits and capacities. (shrink)

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This chapter provides an analysis of the legal governance that applies to genome-editing technologies for human biomedical research and cell therapies in Singapore. Genome-editing technologies refer to a group of techniques that include CRISPR/Cas9, which is a technological tool by whichgene locus can be altered to create a specific genetic modification at that precise locus. For the purposes of this chapter, reference togene-editing technologies includes techniques that could modify the genetic composition of a (...) human cell. The ability to apply such techniques to human somatic and germline cells can eventually offer therapeutic opportunities to treat severe hereditary diseases by repairing the disease-causinggene. With a few exceptions,gene-editing technologies remain technically challenging and complex to implement safely and effectively at the time of writing, mainly because of fundamental limitations in the ability to precisely control how genetic material can be altered or introduced into cells. In other words, safety continues to be the foremost of concerns if such technologies are to be administered as clinical practice. Apart from concerns about physical wellbeing,gene-editing technologies have also raised concerns that relate to eugenics as they can be applied for non-therapeutic purposes or otherwise for the purposes of genetic enhancement. This chapter discusses the legal responses in Singapore to these and related concerns as legal governance of an emergent biomedicaltechnology. Legal governance refers not only to statutory laws and regulations, but also to ethical principles, recommendations and good practices that either have regulatory effect or represent the legal or regulatory ends of legal requirements that apply to the use of genome-editing technologies in Singapore. (shrink)

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Since its development, scientists have proclaimed that the novelgeneeditingtechnology CRISPR-Cas will allow them to modify organisms with unprecedented speed and accuracy. In agriculture, CRISPR-Cas is said to significantly extend the possibilities to genetically modify common livestock animals. Genetic targets in livestock include edits to optimize yield, minimize environmental impacts, and improve animal health, among other targets that could be environmentally, medically, and economically beneficial. In Germany, a transdisciplinary research consortium consisting of geneticists, local animal (...) breeding organizations, social scientists and legal scholars co-developed a “vanguard vision” (Hilgartner in Science and democracy: Making knowledge and making power in the biosciences and beyond, Routledge, London, 2015) for CRISPR-Cas edits in livestock that would improve animal health and benefit local small- to medium-scale farmers. Part of our social science work in this consortium was to discuss these specific application scenarios with members of the public in focus group settings. In this article, we trace how the public engaged with the consortium’s vision ofgeneediting in smaller-scale animal agriculture. We found that instead of engaging with the vision proposed, a majority of participants held an entrenched “sociotechnical imaginary” (Jasanoff and Kim in Minerva 47:119–146, 2009) that was rooted in “storylines” (Hajer in The politics of environmental discourse: Ecological modernization and the policy process, Clarendon, Oxford, 1995) focused on factory farming, drawing upon arguments from German public and media discourses, NGO campaigning, and political decision-making about genetically modified organisms in the early 2000s. Our analysis points to the difficulties of establishing alternative visions oftechnology use once a specific sociotechnical imaginary has been established in a distinct national context, and raises questions regarding the possibilities of responsible research and innovation for highly contested technologies. (shrink)

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Volume 19, Issue 7, July 2019, Page 41-43.

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The revolutionary potential of the CRISPR-Cas9geneediting technique has created a resurgence in enthusiasm and concern in genetic research perhaps not seen since the mapping of the human genome at the turn of the century. Some such concerns and anxieties revolve around crossing lines between somatic and germline interventions as well as treatment and enhancement applications. Underpinning these concerns, there are familiar concepts of safety, unintended consequences and damage to genetic identity and the creation of designer children (...) through pursuing human enhancement and eugenics. In the policy realm, these morally laden distinctions and anxieties are emerging as the basis for making important and applied measures to respond to the fast-evolving scientific developments. This paper argues that the dominant normative framing for such responses is insufficient for this task. This paper illustrates this insufficiency as arising from a continued reliance on misleading genetic essentialist assumptions that generate groundless speculation and over-reactionary normative responses. This phenomenon is explicit with regard to prospective human genetic enhancements. While many normative theorists and state-of-the-art reports continue to gesture toward the influence of environmental and social influences on a person and their traits and capacities, this recognition does not extend to the substance of the arguments themselves which tend to revert to the debunked genetic determinist framework. Given the above, this paper argues that there is a pressing need for a more central role for sociological input into particular aspects of this “enhancement myth” in order to give added weight, detail and substance to these environmental influences and influence from social structures. (shrink)

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Despite the advent of CRISPR, safe and effectivegeneediting for human enhancement remains well beyond our current technological capabilities. For the discussion about enhancing human beings to be worth having, then, we must assume thatgene-editingtechnology will improve rapidly. However, rapid progress in the development and application of anytechnology comes at a price: obsolescence. If the genetic enhancements we can provide children get better and better each year, then the enhancements granted (...) to children born in any given year will rapidly go out of date. Sooner or later, every modified child will find him- or herself to be “yesterday’s child.” The impacts of such obsolescence on our individual, social, and philosophical self-understanding constitute an underexplored set of considerations relevant to the ethics of genomeediting. (shrink)

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Though questions about whethergeneediting 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 germlinegeneediting has been criticized for focusing on the wrong questions. But questions about responsible translational pathways—questions about howgeneediting could be done ethically—are, in an important sense, prior to questions about whether it is desirable and permissible. Asking (...) “whether” questions aboutgeneediting requires a model of what responsible clinical use ofgeneediting would look like. (shrink)

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Genetic engineering has been a topic of discussion for over 50 years, but it is only recently thatgeneediting has become a reality. CRISPR biotechnologies have madegeneediting much safer, precise and feasible. We have witnessed the first cases of human germline genetic modification resulting in live births, conducted by He Jiankui. In this paper, we will analyse He Jiankui’s case in relation to one of the most difficult problems in procreative ethics (or the (...) ethics of future generations): the non‐identity problem. We believe that this analysis will help us to understand the ethics involved ingeneediting and hopefully allow for a better, more philosophically grounded legislation on CRISPR and othergene‐editing technologies. (shrink)

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Human germlinegeneediting constitutes an extremely promisingtechnology; at the same time, however, it raises remarkable ethical, legal, and social issues. Although many of these issues have been largely explored by the academic literature, there are gender issues embedded in the process that have not received the attention they deserve. This paper examines ways in which this new tool necessarily affects males and females differently—both in rewards and perils. The authors conclude that there is an urgent (...) need to include these gender issues in the current debate, before giving a green light to this newtechnology. (shrink)

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The release of genetically engineered organisms into the shared environment raises scientific, ethical, and societal issues. Using some form of democratic deliberation to provide the public with a voice on the policies that govern these technologies is important, but there has not been enough attention to how we should connect public deliberation to the existing regulatory process. Drawing on lessons from previous public deliberative efforts by U.S. federal agencies, we identify several practical issues that will need to be addressed if (...) relevant federal agencies are to undertake public deliberative activities to inform decision‐making aboutgeneediting in the wild. We argue that, while agencies may have institutional capacity to undertake public deliberative activities, there may not be sufficient political support for them to do so. Advocates of public deliberation need to make a stronger case to Congress about why federal agencies should be encouraged and supported to conduct public deliberations. (shrink)

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Technologies like CRISPR andgene drives are ushering in a new era of genetic engineering, wherein the technical means to modify DNA are cheaper, faster, more accurate, more widely accessible, and with more far-reaching effects than ever before. These cutting-edge technologies raise legal, ethical, cultural, and ecological questions that are so broad and consequential for both human and other-than-human life that they can be difficult to grasp. What is clear, however, is that the power to directly alter not just (...) a singular form of life but also the genetics of entire species and thus the composition of ecosystems is currently both inadequately regulated and undertheorized. InGeneEditing, Law, and the Environment, distinguished scholars from law, the life sciences, philosophy, environmental studies, science andtechnology studies, animal health, and religious studies examine what is at stake with these new biotechnologies for life and law, both human and beyond. (shrink)

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Geneediting techniques, such as CRISPR, are being heralded as powerful new tools for delivering agricultural products and foods with a variety of beneficial traits quickly, easily, and cheaply. Proponents are concerned, however, about whether the public will accept the newtechnology and that excessive regulatory oversight could limit thetechnology’s potential. In this paper, we draw on the sociotechnical imaginaries literature to examine how proponents are imagining the potential benefits and risks ofgene (...) class='Hi'>editing technologies within agriculture. We derive our data from a content analysis of public comments submitted to the Food and Drug Administration’s 2017 docket titled “GenomeEditing in New Plant Varieties Used for Food.” Our sample frame consists of 26 comments representing 30 agriculture and biotech companies, organizations, and trade associations. Our findings reveal three key sociotechnical imaginaries, including thatgeneediting technologies in agriculture: are not GMO but instead equivalent to traditional plant breeding; have the potential to usher in a new Green Revolution; and could facilitate the democratization of agricultural biotechnologies. We argue that forming and projecting these collective interpretations of the potential ofgeneediting technologies for crops and foods plays an important role in efforts by proponents to influence regulatory oversight, modes of governance, and build public acceptance. This research contributes to calls by science andtechnology studies scholars to investigate emergent concerns and imaginaries for novel technoscientific advances to help inform upstream models of public engagement and governance decisions. (shrink)

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New emerging biotechnologies, such asgeneediting, vastly extend our ability to alter the human being. This comes together with strong aspirations to improve humans not only physically, but also mentally, morally, and socially. These conjoined ambitions aggregate to what can be labelled “thegeneediting of super-ego.” This article investigates a general way used to argue for new biotechnologies, such asgene-editing: if it is safe and efficacious to implementtechnology X for (...) the purpose of a common good Y, why should we not do so? This is a rhetorical question with a conditional, and may be dismissed as such. Moreover, investigating the question transformed into a formal argument reveals that the argument does not hold either. Nonetheless, the compelling force of the question calls for closer scrutiny, revealing that this way of arguing for biotechnology is based on five assumptions. Analysis of these assumptions shows their significant axiological, empirical, and philosophical challenges. This makes it reasonable to claim that these kinds of question based promotions of specific biotechnologies fail. Hence, the aspirations to make a super-man with a super-ego appear fundamentally flawed. As these types of moral bioenhancement arguments become more prevalent, a revealing hype test is suggested: What is special with thistechnology, compared to existing methods, that makes it successful in improving human social characteristics in order to make the world a better place for all? Valid answers to this question will provide good reasons to pursue such technologies. Hence, the aim is not to bar the development of modern biotechnology, but rather to ensure good developments and applications of highly potent technologies. So far, we still have a long way to go to make persons with goodnessgene. (shrink)

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Novel technological developments mean thatgeneediting – making deliberately targeted alterations in specific genes – is now a clinical reality. The inherited metabolic disorders, a group of clinically significant, monogenic disorders, provide a useful paradigm to explore some of the many ethical issues that arise from this technological capability. Fundamental questions about the significance of the genome, and of manipulating it by selection orediting, are reviewed, and a particular focus on the legislative process that has (...) permitted the development of mitochondrial donation techniques is considered. Ultimately, decisions about what we should do withgeneediting must be determined by reference to other non-genomic texts that determine what it is to be human – rather than simply to undertakegeneediting because it can be done. (shrink)

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In an article in this journal, Katherine Drabiak argues that green lighting genomeediting of human embryos is contrary to “fundamental human rights law.” According to the author, genomeediting of human embryos violates what we should recognize as a fundamental human right to inherit a genome without deliberate manipulation. In this reply article, we assess Drabiak's legal analysis and show methodological and substantive flaws. Methodologically, her analysis omits the key international legal instruments that form the so‐called International (...) Bill of Rights and thus fails to provide a full and accurate account of the fundamental international human rights standards. Substantively, Drabiak invokes, as a basis for prohibitinggeneediting of human embryos, a legal standard (the rights and integrity of the future child) that is unknown to international law. Contrary to Drabiak's account, genomeediting of human embryos is not prohibited under international law. Indeed, the right to health and the right to benefit from scientific progress may be interpreted as the basis of a legal duty to provide equality of access to germlinegeneediting, once determined it is beneficial and safe to use. (shrink)

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Many writers in bioethics, science, and medicine contend that embryo selection is a morally better way of avoiding genetic disorders thengeneediting, as the latter has risks that the former does not. We argue that one reason to usegeneediting is that in many cases it would be better for the person who would develop from the edited embryo, so that not to have done it would have been worse for that person. By contrast, (...) embryo selection is never better for the person who develops from the selected embryo. This reason to usegeneediting has, however, been challenged on two grounds: first, that it makes no difference, morally, whether a bad effect is worse for someone, or a good effect better for someone; and, second, that beneficentgeneediting would not be unequivocally better for the person who would develop from the edited embryo. We argue that both of these objections can be satisfactorily answered and thus that there is indeed a significant moral reason, at least in some cases, to usegeneediting rather than embryo selection. (shrink)

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One of the most prominent justifications for the use of germlinegeneediting (GGE) is that it would allow parents to have a “genetically related child” while preventing the transmission of genetic disorders. However, we argue that since future uses of GGE may involve large-scale genetic modifications, they may affect the genetic relatedness between parents and offspring in a meaningful way: Due to certain genetic modifications, children may inherit much less than 50% of their DNA from each parent. (...) We show that the reduction in genetic relatedness between parents and offspring has three important social and legal implications. First, the desire for a genetically related child may end up not being the strong justification it is currently thought to be for the use of GGE. Second, prospective parents may be reluctant to use GGE because of a potential loss of genetic relatedness. Third, in some jurisdictions, parents who would not pass on “enough” DNA to their child may not be recognized as the child's legal parents. We further argue that the reduction in genetic relatedness challenges current conceptions of genetic parenthood that rely on the quantity of DNA shared with the child or on whether the child was directly derived from the parent's genes. We suggest that genetic parenthood should instead be determined based on the nature of the genetic modifications and whether the child's numerical identity has been preserved after theediting process. (shrink)

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Recent research with human embryos, in different parts of the world, has sparked a new debate on the ethics of genetic human enhancement. This debate, however, has mainly focused ongene-editing technologies, especially CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats). Less attention has been given to the prospect of pursuing genetic human enhancement by means of IVF (In Vitro Fertilisation) in conjunction with in vitro gametogenesis, genome-wide association studies, and embryo selection. This article examines the different ethical implications (...) of the quest for cognitive enhancement by means ofgene-editing on the one hand, and embryo selection on the other. The article focuses on the ethics of cognitive enhancement by means of embryo selection, as thistechnology is more likely to become commercially available before cognitive enhancement by means ofgene-editing. This article argues that the philosophical debate on the ethics of enhancement should take into consideration public attitudes to research on human genomics and human enhancement technologies. The article discusses, then, some of the recent findings of the SIENNA Project, which in 2019 conducted a survey on public attitudes to human genomics and human enhancement technologies in 11 countries (France, Germany, Greece, the Netherlands, Poland, Spain, Sweden, Brazil, South Africa, South Korea, and United States). (shrink)

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Asgeneediting technologies such as CRISPR have become increasingly prominent, so have media portrayals of them. With this in mind, the present study builds on theoretical accounts of framing effects, cultivation effects, and genre-specific viewing effects to examine how different forms of media use predict attitudes toward applications ofgeneediting. Specifically, the study tests how news use, overall television viewing, and science fiction viewing are related to such attitudes. The analyses draw on original data (...) from two surveys of the U.S. public, one conducted in 2020 and the other in 2021. The results from both surveys indicate that news use and overall television viewing predict support for uses ofgeneediting, whereas science fiction viewing is not significantly related to opinion. The findings suggest that media frames and images may carry implications for the trajectory of public opinion aboutgeneediting technologies and, ultimately, the social context for their development and adoption. (shrink)

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Given the potentially powerful effects ofgeneediting for human lives, it seems reasonable to reflect on the issue from a variety of scientific, moral, cultural, and religious perspectives to help us deploy thistechnology with a clear eye to all its possible implications. Given the global impact genetic modification will likely have, an inquiry seriously engaging with the values and ideals of non-Western cultures and societies will be helpful to achieve the sort of balanced understanding that (...) will enable a proper evaluation. This chapter examines the account of well-being found in the Daoist classic, the Zhuangzi, and highlights some insights that can be fruitfully explored in the context of the ethics ofgeneediting. The thesis is that, from the perspective of Zhuangzi’s conception of human flourishing, there are reasons for rejecting the use of genetic modificationtechnology. (shrink)

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Gene-editing technologies, such as CRISPR/Cas9, are internationally ethically fraught. In the United States, policy surroundinggene-editing has yet to be implemented, while the science continues to speed ahead. However, it is not enough that policy be implemented: in order for policy to establish limits for thetechnology such that benefits are possible while threats are kept at bay, such policy must be ethical. In turn, the ethics ofgene-editing is a culturally determined field (...) of inquiry. This piece presents a proposal for a study whose goal is to arrive at ethical policy recommendations for policymakers. To achieve this goal, this study proposes, what needs to be done is, first, to understand the full history and foundation ofgene-editing by conducting a thorough legal, bioethical, and policy review for precedent assisted reproductive technologies and genetic reproductive technologies. Following this effort, an empirical study must be conducted involving careful surveys of key stakeholder groups on their knowledge and opinions ofgene-editing. Such stakeholder groups must include bioethicists, medical geneticists, and lay persons, including those in the disability community. (shrink)

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In March 2022 the US Food and Drug Administration (FDA) published a risk assessment of a recent animalgeneediting proposal submitted by Acceligen™. The proposal concerned the possibility of changing the cattle genome to obtain a slicker, shorter hair coat. Using CRISPR-Cas9 it was possible to introduce an intentional genomic alteration (IGA) to the prolactin receptorgene (PRLR), thereby producing PRLR-SLICK cattle. The goal was to diminish heat stress in the cattle by enhancing their heat-tolerance. With (...) regard to unintended alterations (i.e., off-target effects), the FDA stated that the IGA posed a low, but still present, risk to animal safety. The aim of this article is to present some initial insights into the welfare issues raised by PRLR-SLICK cattle by addressing the question: Do SLICK cattle have better welfare than non-SLICK cattle when exposed to heat stress? Two potential welfare concerns are examined. The first is pleiotropy, an issue that arises when onegene affects multiple traits. Given the pleiotropic nature of prolactin, it has been suggested that the IGA for SLICK cattle may also affect their hepatic and other functions. The second concern relates not primarily to direct effects on cattle health, but rather to the indirect risk that this more heat-tolerant animal would just be used in the livestock sector under farming conditions that are such that the net welfare improvement would be non-existent. (shrink)

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The study examines the creation ofgene-edited infants from the perspective of biopolitics. Through an analysis at the level of “body-power”, we show that the infants are a product of an advanced stage of biopolitics. On the other hand, considering the level of “space-power”, we indicate that the mechanism of space deepens the governance of population through biopower, leading to real conflicts between past and future in the present. The infants can be seen as “heterotopias of mirrors”, where super-reality (...) replaces the reality, culminating in a rational dilemma. We must also consider how to maintain our self-contemplation and naturalness when faced with the physical nature of humans and how to ensure that the state is fulfilling its role in regulating the use ofgene-editingtechnology. Ultimately, we need to engage in a deeper rethinking and criticism of modernity to safeguard our values from being lost in the tide of modernization. (shrink)

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In light of the development of “CRISPR”technology, new promising advances in therapeutic and preventive approaches have become a reality. However, with it came many ethical challenges. The most recent worldwide condemnation of the first use of CRISPR to genetically modify a human embryo is the latest example of ethically questionable use of this new and emerging field. Monotheistic religions are very conservative about such changes to the human genome and can be considered an interference with God’s creation. Moreover, (...) these changes could cause perpetual changes to future generations. The Muslim scholars establish their decisions by addressing five foundations of Islamic law i.e. “maqāṣid al sharı̄`a”; the purposes of the law. These are dın̄, nafs, nasl, `aql and māl. To achieve this, the five principles should all be met before approval of an experiment like the Chinese embryo modifications; Qaṣd which is achieved in this case as it aims to protect the embryo from HIV. Yaqın̄ and Ḍarar were not satisfied as they require strong scientific certainty of the procedures, and evidence of safety. Ḍarūra by which the alternatives being compared; in this case more established and proven safe alternatives to protect the HIV transmission from the father are available, so this principle is not met. The final principle is `Urf, by which the social context of using any contemporarytechnology should be taken in consideration, and clearly this was not achieved. Collectively, germline changes are rejected from an Islamic perspective until the five principles are fulfilled. In the Chinese Twinsgeneediting case, there was clearly no justification or support for it according to the Muslim Jurisprudence laws. These laws and approaches can serve as an ethical checklist for such controversial research, especially in early stages of the research. (shrink)

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Genomeediting with engineered nucleases (GEENs) introduce site‐specific DNA double‐strand breaks (DSBs) and repairs DSBs via nonhomologous end‐joining (NHEJ) pathways that eventually create indels (insertions/deletions) in a genome. Whether the features of indels resulting fromgeneediting could be customized is asked. A review of the literature reveals howgeneediting technologies via NHEJ pathways impactgeneediting. The survey consolidates a body of literature that suggests that the type (insertion, deletion, and complex) (...) and the approximate length of indel edits can be somewhat customized with different GEENs and by manipulating the expression of key NHEJ genes. Structural data suggest that binding of GEENs to DNA may interfere with binding of key components of DNA repair complexes, favoring either classical‐ or alternative‐NHEJ. The hypotheses have some limitations, but if validated, will enable scientists to better control indel makeup, holding promise for basic science and clinical applications ofgeneediting. Also see the video abstract here https://youtu.be/vTkJtUsLi3w. (shrink)

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Environmental releases ofgene edited (GEdOs) andgene drive organisms (GDOs) will likely occur under conditions of high uncertainty and in complex socioecological systems. Therefore, public deliberation is especially important to account for diverse interpretations of safety, risks, and benefits; to draw on experiential and public wisdom in areas of proposed release; to ameliorate dangers of technological optimism; and to increase the public legitimacy of decisions. Yet there is a “democratic deficit” in the United States' oversight system for (...) GEdOs and GDOs, as unconflicted experts, publics, and skeptical stakeholders are most often excluded from decision‐making and unavailable to critically examine potential risks and benefits or raise broader concerns about socioeconomic or cultural impacts. This article argues for the need to open up decision‐making for GEdOs and GDOs, discusses the challenges for doing so within the current oversight framework, and finally, proposes institutional, policy, and attitudinal changes that are likely important for overcoming barriers to public deliberation. (shrink)

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The development of technologies forgeneediting in the wild has the potential to generate tremendous benefit, but also raises important concerns. Using some form of public deliberation to inform decisions about the use of these technologies is appealing, but public deliberation about them will tend to fall back on various forms of heuristics to account for limited personal experience with these technologies. Deliberations are likely to involve narrative reasoning—or reasoning embedded within stories. These are used to help (...) people discuss risks, processes, and fears that are otherwise difficult to convey. In this article, we identify three forms of collective narrative that are particularly relevant to debates about modifying genes in the wild. Our purpose is not to privilege any particular narrative, but to encourage people involved in deliberations to make these narratives transparent. Doing so can help guard against the way some narratives—referred to here as “crafted narratives”—may be manipulated by powerful elites and concentrated economic interests for their own strategic ends. (shrink)

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Medical science at its core aims to preserve health and eliminate disease, but a common theme in scientific discovery is the application of findings in ways that were not the primary intent. The development of diagnostic modalities to predict the health of resulting children has been a fundamental aim underpinning research into prenatal and preimplantation diagnostic modalities; however, the knowledge gained has in some cases been utilized for nonmedical purposes. As an example, amniocentesis developed to determine whether the pregnancy is (...) chromosomally normal also provides information about the sex of the fetus, which normally does not affect health. The emerginggene‐editing technologies that could be used to repair mutated disease‐causing genes in an embryo will presumably also be able to be used to alter traits unrelated to disease. And yet, I will argue, the desire to preserve the mystery of reproduction remains a central value in humans’ quest to reproduce. This yearning to maintain the mysteries will likely temper the development of strategies to alter our genome and affect the genetic identities of our offspring. In my experience as an obstetrician and reproductive endocrinology and infertility subspecialist, people want to have, not the best possible baby, but rather their own baby. (shrink)

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International uproar followed the recent announcement of the birth of twin girls whose genomes had been edited with a breakthrough DNAediting-technology. Thistechnology, called clustered regularly interspaced short palindrome repeats or CRISPR-Cas9, can alter any DNA, including DNA in embryos, meaning that changes can be passed to the offspring of the person that embryo becomes. Should we usegeneediting technologies to change ourselves, our children, and future generations to come? The potential uses of (...) CRISPR-Cas9 and othergeneediting technologies are unprecedented in human history. By using these technologies, we eradicate certain dreadful diseases. Altering human DNA, however, raises enormously difficult questions. Some of these questions are about safety: Can these technologies be deployed without posing an unreasonable risk of physical harm to current and future generations? Can all physical risks be adequately assessed, and responsibly managed? Butgeneediting technologies also raise other moral questions, which touch on deeply held, personal, cultural, and societal values: Might such technologies redefine what it means to be healthy, or normal, or cherished? Might they undermine relationships between parents and children, or exacerbate the gap between the haves and have-nots? The broadest form of this second kind of question is the focus of this book: What mightgeneediting--and related technologies--mean for human flourishing? In the new essays collected here, an interdisciplinary group of scholars asks age--old questions about the nature and well-being of humans in the context of a revolutionary new biotechnology--one that has the potential to change the genetic make-up of both existing people and future generations. Welcoming readers who study related issues and those not yet familiar with the formal study of bioethics, the authors of these essays open up a conversation about the ethics ofgeneediting. It is through this conversation that citizens can influence laws and the distribution of funding for science and medicine, that professional leaders can shape understanding and use ofgeneediting and related technologies by scientists, patients, and practitioners, and that individuals can make decisions about their own lives and the lives of their families. (shrink)

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Mainstream academic debate on the ethics of humangeneediting is currently not as inclusive as it should be. For example, it currently does not give due consideration to Indigenous groups and cultures, such as those living in rural and remote areas of Canada. Once such people are given due consideration, then several important points emerge, which have so far gone unnoticed or under‐emphasized in the debate. This article focuses on two of those points: (a) Some vulnerable people (...) who are currently being ignored in the debate may not desire to usegeneediting, even if it is safe, effective and affordable, and they will have compelling reasons for making this decision; and (b) even if such people do decide to use thetechnology, thegeneediting enterprise itself is unlikely to do much good for them (and may even be harmful to them), as it alarmingly misses the point regarding the underlying contributing causes of the most pressing problems that those people are facing. Therefore, the promise of thegeneediting enterprise is a hollow one for some groups of vulnerable people. These considerations should be used more prominently to guide debate on the ethics of humangeneediting. (shrink)

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Comparisons between germlinegeneediting using CRISPRtechnology and a renewal of eugenics are evident in the current bioethical discussions. This article examines the different roles of such references to the past. In the first part, the alleged parallels betweengeneediting of the germline and eugenics are addressed from three perspectives: First, the historical adequacy of such comparisons is questioned. Second, it is asked whether the evils of the past can in fact be attributed (...) to (future) practices of germlinegeneediting. Third, it is discussed whether the alleged hazards of eugenics should in fact universally be condemned from a moral perspective. The article attempts to show that references to the eugenic past to rebutgeneediting are highly selective and should be abandoned to allow for a more transparent ethical discourse. While the comparison with a eugenic past is frequently drawn by opponents of germlinegeneediting, the remaining part of this article investigates historic references from the proponents of germlinegeneediting. It is argued that they also employ different narratives of the past to justify their own liberal position. While such references are equally problematic, some lessons from the history of eugenics will be spelled out that can inform future debates on germlinegeneediting. (shrink)

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When the use of CRIsPR-Cas9 to edit DNA was first reported in 2012, it was quickly heralded by scientists, policymakers, and journalists as a transformativetechnology. CRISPR-Cas9 provides the means to change DNA in ways that either were not generally possible using previous genetic technologies or that were orders of magnitude more laborious or inefficient to undertake. CRISPR's possible applications were readily apparent and seemingly endless, from supercharging laboratory research to modifying insects that transmit disease to eliminating genetic conditions. (...) By 2015, Wired magazine was calling the discovery "The Genesis Engine."Against a backdrop of disappointing results fromgene transfer... (shrink)

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CRISPR, a recently developedgene-editing tool, has become synonymous with rapid biological advancement. Whilegeneediting had been performed in life sciences research for decades, genetic engineering with CRISPR is much more straightforward, faster, and less expensive—and thus, thetechnology has been rapidly democratized. CRISPR was built on a natural mechanism, the method by which bacteria resist infections from viruses called bacteriophage. Once infected, bacteria may recognize specific genetic sequences of the invading bacteriophage virus and (...) chop its genetic material into pieces. This bacterial immune response, discovered through basic research, has been exploited by scientists to develop agene-editing tool... (shrink)

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In the wake of the advent of genomeeditingtechnology CRISPR-Cas9 (clustered regularly interspaced palindromic repeat (CRISPR)-associated protein 9), there has been a global debate around the implications of manipulating the human genome. While CRISPR-based germlinegeneediting is new, the debate about the ethics ofgeneediting is not – for several decades now, scholars have debated the ethics of making heritable changes to the human genome. The arguments that have been raised both (...) for and against the use of genetic technologies in human reproduction reiterate much of the arguments made in the pre-CRISPR debate. As such, it is instructive for South Africa to reflect on these arguments now, in considering our position on the regulation of the use of this novel biotechnology. There are two dominant schools of thought in this area, bioliberalism and bioconservatism. Bioconservatives raise concerns about the risks of genetic manipulation, and argue that it ought to be limited or prohibited to avert these risks to human health and human nature. Bioliberal scholars are more open to the prospect of genetic manipulation, because of its potential utility. In this article, I conclude that in liberal democracies such as our own, bioliberal arguments ought to be seriously considered when formulating policy on human genomeediting because of the extent to which they resonate with our Constitutional values and human rights. I further suggest that there is a need for an enquiry into the relevance of African perspectives on the ethical questions that arise concerning germline genomeediting. (shrink)

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Despite the promise of newgeneediting technologies (GETs) (e.g., CRISPR) in accelerating sustainable agri-food production, the social acceptability of these technologies remains unclear. Prior literature has primarily addressed the regulatory and economic issues impacting GETs ongoing acceptability, while little work has examined socio-cultural impacts despite evolving food policies and product commercialisation demanding input from various actors in the food system. Our systematic review across four databases addresses this gap by synthesising recent research on food system actors’ perspectives (...) to identify the key socio-cultural factors influencing GET acceptability. This review extends prior literature by including views from a more diverse range of actors (e.g., farmers and NGOs) and provides a better understanding of their perceived social benefits and concerns. We find food system actors perceive positive and negative impacts of using GETs in agriculture. These perspectives are often entangled in broader debates regarding sustainability and food systems issues (e.g., social justice). We discuss practical recommendations for policymakers, agri-food industry managers, and scientists to better aligngene edited foods (GEFs) with food system actors’ values. GEF policy, development, and commercialisation must reflect social values such as collective wellbeing and transparency to improve actors’ acceptability. More research is required among marginalised food actors such as Indigenous and smallholder farmers. (shrink)

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:Since the advent of recombinant DNAtechnology, 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,geneediting research has made enormous strides toward potential clinical use. This paper argues that when it comes to determining permissible uses ofgeneediting 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 forgeneediting research involve a different kind ofediting 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 ofgeneediting in reproductive medicine ever becomes a possibility. (shrink)

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Anticipatory policy forgeneediting requires assessing public opinion about this newtechnology. Although previous surveys have examined respondents’ views on the moral acceptability of various hypothetical uses of CRISPR, they have not considered whether these scenarios are perceived as plausible. Research in construal level theory indicates that participants make different moral judgments about scenarios seen as likely or near and those seen as unlikely or distant. Therefore, we surveyed a representative sample of 400 Americans and Canadians (...) about both the likelihood and the permissibility of 23 commonly discussed uses ofgeneediting. Respondents with more knowledge ofgeneediting generally thought these applications would be more likely within the next 20 years. There was a strong positive relationship between the perceived likelihood and permissibility of most CRISPR applications. Our results suggest that ongoing public engagement efforts forgeneediting could be improved by taking its perceived time-frames into account. (shrink)

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This discussion note offers a preliminary analysis of what recent developments in human germlinegeneediting tell us about the effectiveness of speculative and anticipatory modes of techno-ethics. It argues that the benefits of speculative discussions are difficult to detect thus far, and that pushing the focal point of ethical discourse well ahead of the current state oftechnology may prematurely undermine existing norms long before a broad consensus would justify moving beyond them.

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Recent scientific advances in the field ofgeneediting have led to a renewed discussion on the moral acceptability of human germline modifications.Geneediting methods can be used on human embryos and gametes in order to change DNA sequences that are associated with diseases. Modifying the human germline, however, is currently illegal in many countries but has been suggested as a ‘last resort’ option in some reports. In contrast, preimplantation genetic diagnosis is now a well-established (...) practice within reproductive medicine. Both methods can be used to prevent children from being born with severe genetic diseases. This paper focuses on four moral concerns raised in the debate about germlinegeneediting and applies them to the practice of PGD for comparison: Violation of human dignity, disrespect of the autonomy and the physical integrity of the future child, discrimination of people living with a disability and the fear of slippery slope towards immoral usage of thetechnology, e.g. designing children for specific third party interests. Our analysis did not reveal any fundamental differences with regard to the four concerns. We argue that with regard to the four arguments analyzed in this paper germlinegeneediting should be considered morally as acceptable as the selection of genomes on the basis of PGD. However, we also argue that any application of GGE in reproductive medicine should be put on hold until thorough and comprehensive laws have been implemented to prevent the abuse of GGE for non-medical enhancement. (shrink)

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The recent development of CRISPR/Cas9technology has rekindled the ethical debate concerning human germline modification that has begun decades ago. This inexpensivetechnology shows tremendous promise in disease prevention strategies, while raising complex ethical concerns about safety and efficacy of thetechnology, human dignity, tampering with God’s creation, and human genetic enhancement. Germlinegeneediting may result in heritable changes in the human genome, therefore the question of whether it should be allowed requires deep and (...) careful discussion from various perspectives. This paper explores Islamic perspectives on the concerns raised and highlights the ethical principles in Islam that should be taken into consideration when assessing the permissibility of CRISPR/ Cas9-mediated human germlinegeneediting. As argued in this paper, human germlinegeneediting would be considered lawful for medical purpose under certain conditions. It should not be applied on humans until the safety and efficacy issues are resolved. Robust ethical guidelines and strict regulations are necessary to preserve human dignity and to prevent premature and misuse of thetechnology. Maqasid al-shariah’s principles of preservation of human life, lineage, and dignity and ‘preventing harm takes precedence over securing benefit’ are among the guiding principles in assessing the permissibility of CRISPR/Cas9-mediated human germlineediting from an Islamic perspective. Further discussions are important to address the controversies as well as to explore the related ethical principles. (shrink)

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This paper provides an ethical analysis of the controversy that arose from the CRISPR/Cas9geneediting research involving human embryos that was conducted by a research team in Guangzhou, China, in 2015. It is argued that the researchers involved did not overstep ethical boundaries. This was confirmed to be the case in an international meeting of experts that was convened following the controversy. It is further argued that the controversy highlights the tension between two fundamentally different policies on (...) developing genomeeditingtechnology – one proactionary and the other precautionary. This paper argues for a third approach, based on the policy of “crossing the river by probing stones”. Such an approach is consistent with current international recommendations to prioritise basic and pre-clinical research, and to allow the application of genomeeditingtechnology to somatic human cells. However, the application of thetechnology in germline genetic modification for human reproduction or enhancement for medical purposes should not be allowed at present. This is because the attending risks are not well understood and could be excessive or extraordinary, with little or no prospect of benefit. In addition, this paper calls for norms and regulations to be developed for genetically modifying non-human living things. [End Page 307] Finally, the paper concludes with a letter that was sent by the author to the New York Times, setting out China’s fundamental stance on genetic modification involving humans and human derivatives. (shrink)

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The rapid development of CRISPR-basedgeneediting has been accompanied by a polarized governance debate about the status of CRISPR-edited crops as genetically modified organisms. This article argues that the polarization around the governance ofgeneediting partly reflects a failure of public engagement with the current state of research in genomics and postgenomics. CRISPR-basedgene-editingtechnology has become embedded in a narrow narrative about the ease and precision of the technique that presents (...) thegene as a stable object under technological control. By tracing the considerably destabilized scientific understanding of thegene in genomics and postgenomics, this article highlights that this publicly mediated ontology strategically avoids positioning the “ease of CRISPR-basedediting” in the wider context of the “complexity of thegene.” While this strategic narrowness of CRISPR narratives aims to create public support forgene-editing technologies, we argue that it stands in the way of socially desirable anticipatory governance and open public dialogue about societal promises and the unintended consequences ofgeneediting. In addressing the polarization surrounding CRISPR-basededitingtechnology, the article emphasizes the need for engagement with the complex state of postgenomic science that avoids strategic simplifications of the scientific literature in promoting or opposing the commercial use of thegene-editingtechnology. (shrink)

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Recently, Chinese researchers published the results of their research using agene-editingtechnology on abnormal human zygotes. The research team believes this research has prospective clinical application, viz., forgene therapy for?-thalassemia, a white blood cell disorder, and plan to persist with further studies, despite technical problems in this experiment. The research has elicited international criticism from both scientific and bioethics domains, because it innovates beyond the current global consensus against human germ line modification. This paper (...) comments on some ethical issues presented by the research report and concludes that, under present circumstances, the Chinese research team did not meet a standard of scientific responsibility.Bangladesh Journal of Bioethics 2015 Vol.6 (1):22-26. (shrink)

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According to what McMahan and Savulescu (2024) call the “popular position”, embryo selection is less ethically problematic thangeneediting (other things being equal). The Two-Tier View, defended by McMahan and Savulescu, implies that the popular position is mistaken. The authors treatgeneediting of embryos similarly to standard cases of medical treatments that promise expected benefits for the (subsequent) person even thoughgeneediting also may create risks of harmful side effects for her. (...) McMahan and Savulescu assume that ifgeneediting is (successfully) done, it is better for the person who developed from the beneficently edited embryo. And, if theediting had not been done, although it was possible, that would have been worse for the same person in question. Thus, the comparator must always be a possible, even if unlikely, world in which she would have existed. That is whygeneediting, in their view, resembles medical treatments. Therefore, assuming that standard medical treatments are not more ethically problematic than embryo selection, they conclude that (in general)geneediting should also be treated as not more problematic than embryo selection. In this paper, I am taking one step further than McMahan and Savulescu in questioning the central assumptions in the bioethical debates about new reproductive technologies. In the previous work, we argued that the very distinction between person-affecting and identity-affecting interventions is based on a questionable form of material-origin essentialism (Żuradzki and Dranseika 2022). Here, I argue that the bipartite distinction between person-affecting and impersonal reasons, as used by McMahan and Savulescu, insufficiently represents different possible counterfactual comparisons between real and merely possible outcomes. In particular, I argue that the evaluation ofgeneediting requires counterfactual comparisons to situations in which the benefited person might or might not exist. Such evaluation requires an additional class of reasons, let me call them “semi-person-affecting,” that cannot be reduced to either person-affecting or impersonal ones. This aspect ofgeneediting makes it dissimilar to standard cases of medical treatments. (shrink)

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The ethical issues associated with germlinegene modification and embryo research are some of the most contentious in current international science policy debates. In this paper, we argue that new genetic techniques, such as CRISPR, demonstrate that there is an urgent need for China to develop its own regulatory and ethical framework governing new developments in genetic and embryo research. While China has in place a regulatory framework, it needs to be strengthened to include better compliance oversight and explicit (...) criteria for how different types of research should be reviewed by regulatory authorities. We also document a variety of opinions about the new technologies among the public, scholars, and policy makers. China needs to develop its own regulations in coordination with other countries; but it is unlikely that an international consensus will be achieved in this area, given the existing differences in regulations between countries. We should aim at harmonization, not necessarily complete consensus, and the perspective from China is vital when international norms are developed and harmonized. Chinese policy makers and researchers need to be aware of the international discussions, at the same time as the international community is aware of, and accommodates, Chinese positions on important policy options. (shrink)

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The use of recently developed genomeediting technologies in food and agriculture (GEAF) is a controversial social issue characterized by clashing discourses about ideal social, political, and economic orders. While dominant imaginaries aboutgeneediting’s future legitimize and are being legitimized by widespread investment into and deployment of thistechnology, the critical voices of actors who hold less political and economic power have been marginalized in their development. In this article, we connect the sociotechnical imaginaries framework (...) to insights from social movement framing theory to examine how and by whom competing sociotechnical imaginaries for this newtechnology are being developed and disseminated in the United States and the European Union, regions which have different histories of both state support for biotechnology and anti-biotechnology activism. Drawing on a qualitative content analysis of online communications documents published by civil society organizations who have publicly articulated opposition to some element of GEAF, we find key differences between the regions with regard to the types of participating actors, their diagnoses of relevant problems, and the degree and type of change that they envision related to food system reform. We argue that these differences in both coalitional & framing strategies, which reflect distinctive visions about the appropriate relationship between science, state, and society, have significant implications for governance, public acceptance, and future development of agriculturalgeneediting in the US and the EU. (shrink)

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