Volume 20, Issue 8, August 2020, Page 27-29.

In this paper, I take seriously calls for public engagement in human genome editing decision-making by endorsing the convening of a “Citizens Jury” in conjunction with the International Commission on the Clinical Use of Human Germline Genome Editing’s next summit scheduled for March 6–8, 2023. This institutional modification promises a more inclusive, deliberative, and impactful form of engagement than standard bioethics engagement opportunities, such as comment periods, by serving both normative and political purposes in the quest to offer moral guidance (...) on gene editing. In examining evidence from the Australian Citizens’ Jury on Genome Editing convened in 2021, I argue that Citizens’ Juries should work in tandem with governing institutions to preserve the role of expertise while ensuring that the diverse views of the public are incorporated into their final reports as well. First, early inclusivity allows “the people” to hold agenda setting power through helping to set resource priorities. This also makes a downstream deliberative event, such as the called for Global Citizens’ Assembly, both more likely to occur and more influential on policy. Second, Jury’s diverse composition promises substantive contributions to the Commission’s work. Third, Citizens’ Juries could help to cultivate the Commission’s trustworthiness. (shrink)

Background Forward-looking, democratically oriented governance is needed to ensure that human genome editing serves rather than undercuts public values. Scientific, policy, and ethics communities have recognized this necessity but have demonstrated limited understanding of how to fulfill it. The field of bioethics has long attempted to grapple with the unintended consequences of emerging technologies, but too often such foresight has lacked adequate scientific grounding, overemphasized regulation to the exclusion of examining underlying values, and failed to adequately engage the public. Methods (...) This research investigates the application of scenario planning, a tool developed in the high-stakes, uncertainty-ridden world of corporate strategy, for the equally high-stakes and uncertain world of the governance of emerging technologies. The scenario planning methodology is non-predictive, looking instead at a spread of plausible futures which diverge in their implications for different communities’ needs, cares, and desires. Results In this article we share how the scenario development process can further understandings of the complex and dynamic systems which generate and shape new biomedical technologies and provide opportunities to re-examine and re-think questions of governance, ethics and values. We detail the results of a year-long scenario planning study that engaged experts from the biological sciences, bioethics, social sciences, law, policy, private industry, and civic organizations to articulate alternative futures of human genome editing. Conclusions Through sharing and critiquing our methodological approach and results of this study, we advance understandings of anticipatory methods deployed in bioethics, demonstrating how this approach provides unique insights and helps to derive better research questions and policy strategies. (shrink)

This discussion note offers a preliminary analysis of what recent developments in human germline gene editing 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 of technology may prematurely undermine existing norms long before a broad consensus would justify moving beyond them.

Participants in the long-running bioethical debate over human germline genetic modification (HGGM) tend to imagine future people abstractly and on the basis of conventionalized characteristics familiar from science fiction, such as intelligence, disease resistance and height. In order to distinguish these from scientifically meaningful terms like “phenotype” and “trait,” this article proposes the term “persemes” to describe the units of difference for hypothetical people. In the HGGM debate, persemes are frequently conceptualized as similar, modular entities, like building blocks to be (...) assembled into genetically modified people. They are discussed as though they each would be chosen individually without affecting other persemes and as though they existed as components within future people rather than being imposed through social context. This modular conceptual framework appears to influence bioethical approaches to HGGM by reinforcing the idea of human capacities as natural primary goods subject to distributive justice and supporting the use of objective list theories of well-being. As a result, assumptions of modularity may limit the ability of stakeholders with other perspectives to present them in the HGGM debate. This article examines the historical trends behind the modular framework for genetically modified people, its likely psychological basis, and its philosophical ramifications. (shrink)

Current advances in assisted reproductive technologies aim to promote the health and well-being of future children. They offer the possibility to select embryos with the greatest potential of being born healthy (eg, preimplantation genetic testing) and may someday correct faulty genes responsible for heritable diseases in the embryo (eg, human germline genome modification (HGGM)). Most laws and policy statements surrounding HGGM refer to the notion of ‘serious’ as a core criterion in determining what genetic diseases should be targeted by these (...) technologies. Yet, this notion remains vague and poorly defined, rendering its application challenging and decision making subjective and arbitrary. By way of background, we begin by briefly presenting two conceptual approaches to ‘health’ and ‘disease’: objectivism (ie, based on biological facts) and constructivism (ie, based on human values). The basic challenge under both is sorting out whether and to what extent social and environmental factors have a role in helping to define what qualifies as a ‘serious’ disease beyond the medical criteria. We then focus on how a human rights framework (eg, right to science and right to the highest attainable health) could integrate the concepts of objectivism and constructivism so as to provide guidance for a more actionable consideration of ‘serious’. Ultimately, it could be argued that a human rights framework, by way of its legally binding nature and its globally accepted norms and values, provides a more universal foundation for discussions of the ethical, legal and social implications of emerging or disruptive technologies. (shrink)

Volume 20, Issue 8, August 2020, Page 25-27.