Researching the future: scenarios to explore the future of human genome editing

Author:

Selin Cynthia,Lambert Lauren,Morain Stephanie,Nelson John P.,Barlevy Dorit,Farooque Mahmud,Manley Haley,Scott Christopher T.

Abstract

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.

Funder

National Institutes of Health

Publisher

Springer Science and Business Media LLC

Subject

Health Policy,Health (social science),Issues, ethics and legal aspects

Reference58 articles.

1. National Academies of Sciences, Engineering, and, Medicine, National Academy of Medicine, National Academy of Sciences, Committee on Human Gene Editing. Scientific, Medical, and ethical considerations. Human genome editing: Science, Ethics, and Governance. Washington, DC: U.S. National Academies Press; 2017.

2. Nuffield Council on Bioethics. Genome Editing: An Ethical Review. London; 2016.

3. WHO Expert Advisory Committee on Developing Global Standards for Governance and. Oversight of Human Genome, Editing, World Health Organization. Human genome editing: a Framework for Governance. Geneva, Switzerland: World Health Organization; 2021.

4. Fogarty NME, McCarthy A, Snijders KE, Powell BE, Kubikova N. Genome editing reveals a role for OCT4 in human embryogenesis. Nature. 2017;550:67–73.

5. Gaj T, Guo J, Kato Y, Sirk SJ, Barbas CF. Targeted gene knockout by direct delivery of ZFN proteins. Nat Methods. 2012;9:805–7.

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