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. 2023 Aug;14(4):371-375.
doi: 10.1007/s12687-023-00652-0. Epub 2023 Jun 16.

"What if" should precede "whether" and "how" in the social conversation around human germline gene editing

Affiliations

"What if" should precede "whether" and "how" in the social conversation around human germline gene editing

Diewertje Houtman et al. J Community Genet. 2023 Aug.

Abstract

Given the potential large ethical and societal implications of human germline gene editing (HGGE) the urgent need for public and stakeholder engagement (PSE) has been repeatedly expressed. In this short communication, we aim to provide directions for broad and inclusive PSE by emphasizing the importance of futures literacy, which is a skill to imagine diverse and multiple futures and to use these as lenses to look at the present anew. By first addressing "what if" questions in PSE, different futures come into focus and limitations that arise when starting with the "whether" or "how" questions about HGGE can be avoided. Futures literacy can also aid in the goal of societal alignment, as "what if" questions can be answered in many different ways, thereby opening up the conversation to explore a multitude of values and needs of various publics. Broad and inclusive PSE on HGGE starts with asking the right questions.

Keywords: Futures literacy; Human germline gene editing; Public engagement; Societal alignment.

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Conflict of interest statement

As of 1st September 2022 the authors are involved in a Netherlands Consortium “Public Realm Entrance of Human Germline Gene Editing” funded by The Netherlands Organization for Scientific Research (NWO NWA.1389.20.075).

Figures

Fig. 1
Fig. 1
Stills from animations by Zaou Vaughan that were developed within the DNA dialogue project. Note. The animations depict three different future narratives of the world in 2039, in which couples with a childwish consider their reproductive options. The futures are titled as follows: (1) The Netherlands say no to genetic modification of embryos, (2) Caring for your baby starts before conception and (3) Equality begins in the genes. For more information about the future narratives and to watch the full animations, see https://www.rathenau.nl/en/gezondheid/discussing-modification-heritable-dna-embryos

References

    1. Almeida M, Ranisch R. Beyond safety: mapping the ethical debate on heritable genome editing interventions. Humanit Soc Sci Commun. 2022;9(1):1–14. doi: 10.1057/s41599-022-01147-y. - DOI
    1. Baylis F. Human germline genome editing and broad societal consensus. Nat Hum Behav. 2017;1(6):1–3. doi: 10.1038/s41562-017-0103. - DOI - PubMed
    1. Baylis F. Questioning the proposed translational pathway for germline genome editing. Nat Hum Behav. 2019;3(3):200–200. doi: 10.1038/s41562-019-0544-3. - DOI - PubMed
    1. Baylis, F. (2019a). Human genome editing. Issues Sci Technol 35(3), 42–44. https://www.jstor.org/stable/26949021
    1. Boardman F. Human genome editing and the identity politics of genetic disability. J Community Genet. 2020;11(2):125–127. doi: 10.1007/s12687-019-00437-4. - DOI - PMC - PubMed

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