RESUMO
In response to calls for public engagement on human genome editing (HGE), which intensified after the 2018 He Jiankui scandal that resulted in the implantation of genetically modified embryos, we detail an anticipatory approach to the governance of HGE. By soliciting multidisciplinary experts' input on the drivers and uncertainties of HGE development, we developed a set of plausible future scenarios to ascertain publics values-specifically, their hopes and concerns regarding the novel technology and its applications. In turn, we gathered a subset of multidisciplinary experts to propose governance recommendations for HGE that incorporate identified publics' values. These recommendations include: (1) continued participatory public engagement; (2) international harmonization and transparency of multiple governance levers such as professional and scientific societies, funders, and regulators; and (3) development of a formal whistleblower framework.
RESUMO
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.
Assuntos
Bioética , Edição de Genes , Humanos , Ciências Sociais , Genoma Humano , PolíticasRESUMO
Scholarly discussion around the governance of human genome editing (HGE) recognizes that development and application of HGE techniques could result in unexpected societal outcomes. However, it contains few to no methodological models for how to anticipate, prepare for, or shape such outcomes. This article presents early-stage results from research guided by anticipatory governance, a framework for broad expert and public consideration of innovation processes and purposes. We present and discuss key themes emerging from a set of future-oriented interviews with genome editing practitioners and experts, designed to inform broadly scoped deliberations about plausible futures of HGE. We articulate our results as seven "open questions," the answers to which will be important components of HGE's eventual shape and outcomes. Some themes are perennial in studies of science and society, and others are more novel to HGE. Each helps to reframe HGE beyond a simple comparison of risk and benefit. Such reframing opens up new and important terrain for discussion among policymakers, academics, scientists, and publics. We suggest that discussion framed around broad and reflexive questions like those presented here will help governance efforts to better acknowledge and flexibly respond to the uncertainty and complexities of HGE developments.
RESUMO
The rapid development of human genome editing (HGE) techniques evokes an urgent need for forward-looking deliberation regarding the aims, processes, and governance of research. The framework of anticipatory governance (AG) may serve this need. This article reviews scholarly discourse about HGE through an AG lens, aiming to identify gaps in discussion and practice and suggest how AG efforts may fill them. Discourse on HGE has insufficiently reckoned with the institutional and systemic contexts, inputs, and implications of HGE work, to the detriment of its ability to prepare for a variety of possible futures and pursue socially desirable ones. More broadly framed and inclusive efforts in foresight and public engagement, focused not only upon the in-principle permissibility of HGE activities but upon the contexts of such work, may permit improved identification of public values relevant to HGE and of actions by which researchers, funders, policymakers, and publics may promote them.
Assuntos
Proteína 9 Associada à CRISPR/genética , Sistemas CRISPR-Cas , Pesquisas com Embriões/ética , Edição de Genes/ética , China , Pesquisas com Embriões/legislação & jurisprudência , Edição de Genes/legislação & jurisprudência , Política de Saúde/legislação & jurisprudência , Humanos , Internacionalidade/legislação & jurisprudência , National Academies of Science, Engineering, and Medicine, U.S., Health and Medicine Division , Estados UnidosRESUMO
Public engagement with science and technology is now widely used in science policy and communication. Touted as a means of enhancing democratic discussion of science and technology, analysis of public engagement with science and technology has shown that it is often weakly tied to scientific governance. In this article, we suggest that the notion of capacity building might be a way of reframing the democratic potential of public engagement with science and technology activities. Drawing on literatures from public policy and administration, we outline how public engagement with science and technology might build citizen capacity, before using the notion of capacity building to develop five principles for the design of public engagement with science and technology. We demonstrate the use of these principles through a discussion of the development and realization of the pilot for a large-scale public engagement with science and technology activity, the Futurescape City Tours, which was carried out in Arizona in 2012.
Assuntos
Fortalecimento Institucional , Comunicação , Participação da Comunidade , Ciência/organização & administração , Tecnologia/organização & administração , Arizona , Política PúblicaRESUMO
The national-level scenarios project NanoFutures focuses on the social, political, economic, and ethical implications of nanotechnology, and is initiated by the Center for Nanotechnology in Society at Arizona State University (CNS-ASU). The project involves novel methods for the development of plausible visions of nanotechnology-enabled futures, elucidates public preferences for various alternatives, and, using such preferences, helps refine future visions for research and outreach. In doing so, the NanoFutures project aims to address a central question: how to deliberate the social implications of an emergent technology whose outcomes are not known. The solution pursued by the NanoFutures project is twofold. First, NanoFutures limits speculation about the technology to plausible visions. This ambition introduces a host of concerns about the limits of prediction, the nature of plausibility, and how to establish plausibility. Second, it subjects these visions to democratic assessment by a range of stakeholders, thus raising methodological questions as to who are relevant stakeholders and how to activate different communities so as to engage the far future. This article makes the dilemmas posed by decisions about such methodological issues transparent and therefore articulates the role of plausibility in anticipatory governance.