Center for Medical Ethics and Health Policy Staff Publications

Language

English

Publication Date

9-21-2023

Journal

BMC Medical Ethics

DOI

10.1186/s12910-023-00951-8

PMID

37735670

PMCID

PMC10512597

PubMedCentral® Posted Date

9-21-2023

PubMedCentral® Full Text Version

Post-print

Abstract

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.

Keywords

Humans, Gene Editing, Social Sciences, Bioethics, Genome, Human, Policy, Anticipation, Human genome editing, Scenario planning, Governance

Published Open-Access

yes

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