Skip to main content
Log in

Public participation in human genome editing research governance: what do scientists think?

  • Research
  • Published:
Journal of Community Genetics Aims and scope Submit manuscript


Within the numerous policy and governance recommendations for human genome editing research, anticipatory public engagement seems universally agreed upon as a vital endeavor. Yet it is unclear whether and how scientists whose research involves genome editing see value in engaging the public in discussions of genome editing research governance. To address this question, we interviewed 81 international scientists who use genome editing in their research. The views of our scientist interviewees about public engagement occupied a broad spectrum from enthusiastic support to strong skepticism. But most scientists’ views landed somewhere in the middle, seeing public engagement as merely informing the public about the science of genome editing. We argue that such a stance reflects the traditional “knowledge-deficit model.” Beyond addressing the operational difficulties of public engagement, many scientists’ adherence to the deficit model is a deeper barrier that needs to be addressed if public engagement is to occur and be successful.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

Data availability

The participants of this study did not give consent for their data to be shared publicly, so supporting data is not available.


  • Abbott A (2014) The system of professions: an essay on the division of expert labor. University of Chicago press

    Google Scholar 

  • Adashi EY, Burgess MM, Burall S, Cohen IG, Fleck LM, Harris J, Holm S, Lafont C, Moreno JD, Neblo MA, Niemeyer SJ (2020) Heritable human genome editing: the public engagement imperative. CRISPR J 3(6):434–439

    Article  PubMed  Google Scholar 

  • Baylis F, Darnovsky M, Hasson K, Krahn TM (2020) Human germ line and heritable genome editing: the global policy landscape. CRISPR J 3(5):365–377

    Article  CAS  PubMed  Google Scholar 

  • Brunk CG (2006) Public knowledge, public trust: understanding the ‘knowledge deficit’. Public Health Genom 9(3):178–183

    Article  Google Scholar 

  • Conley JM, Cadigan RJ, Davis AM, Juengst ET, Kuczynski K, Major R, Stancil H, Villa-Palomino J, Waltz M, Henderson GE (2023) The promise and reality of public engagement in the governance of human genome editing research. Am J Bioeth 23(7):9–16

  • Davies SR (2008) Constructing communication: talking to scientists about talking to the public. Sci Commun 29(4):413–434

    Article  CAS  Google Scholar 

  • Dudo A, Besley JC (2016) Scientists’ prioritization of communication objectives for public engagement. PLoS One 11(2):e0148867

    Article  PubMed  PubMed Central  Google Scholar 

  • European Group on Ethics in Science and New Technologies (EGE) (2021) Opinion on the ethics of gene editing. Publications Office of the European Union, Luxembourg

    Google Scholar 

  • Gorman EH, Sandefur RL et al (2011) Work Occup 38(3):275–302

    Article  Google Scholar 

  • Groenewald T (2008) Memos and memoing. SAGE Encyclopedia Qual Res Methods 2:505–506

    Google Scholar 

  • Gusmano MK, Kaebnick GE, Maschke KJ, Neuhaus CP, Wills BC (2021) Public deliberation about gene editing in the wild. Hastings Cent Rep 51:S2–S10

    Article  PubMed  Google Scholar 

  • Howell EL, Yang S, Beets B, Brossard D, Scheufele DA, Xenos MA (2020) What do we (not) know about global views of human gene editing? Insights and blind spots in the CRISPR era. CRISPR J 3(3):148–155

    Article  PubMed  Google Scholar 

  • Iltis AS, Hoover S, Matthews KR (2021) Public and stakeholder engagement in developing human heritable genome editing policies: what does it mean and what should it mean? Front Political Sci 3:730869

    Article  Google Scholar 

  • Irwin A (2001) Constructing the scientific citizen: science and democracy in the biosciences. Public Underst Sci 10(1):1–8

    Article  Google Scholar 

  • Jasanoff S, Hurlbut JB, Saha K (2019) Democratic governance of human germline genome editing. CRISPR J 2(5):266–271

    Article  PubMed  PubMed Central  Google Scholar 

  • Kuzma J, Cummings CL (2021) Cultural beliefs and stakeholder affiliation influence attitudes towards responsible research and innovation among United States stakeholders involved in biotechnology and gene editing. Front Political Sci 3:677003

    Article  Google Scholar 

  • Lehman LS (2017) Is editing the genome for climate change adaptation ethically justifiable? AMA J Ethics 19(12):1186–1192

    Article  Google Scholar 

  • Massarani L, Bray H, Joubert M, Ridgway A, Roche J, Smyth F, Stevenson E, van Dam F, de Abreu WV (2023) The distribution of science communication teaching around the globe. JCOM. 22(06):A05

    Article  Google Scholar 

  • National Academies of Sciences, Engineering, and Medicine (2017) Human genome editing: science, ethics, and governance. National Academies Press, Washington, DC

    Google Scholar 

  • Nisbet MC, Scheufele DA (2009) What’s next for science communication? Promising directions and lingering distractions. Am J Bot 96(10):1767–1778

    Article  PubMed  Google Scholar 

  • Nyamnjoh AN, Ewuoso C (2023) What constitutes ethical engagement with Africa and the global south? Am J Bioeth 23(7):132–134

    Article  PubMed  Google Scholar 

  • Patel K, Auton MF, Carter B, Watkins CL, Hackett M, Leathley MJ, Thornton T, Lightbody CE (2016) Parallel-serial memoing: a novel approach to analyzing qualitative data. Qual Health Res 26(13):1745–1752

    Article  PubMed  Google Scholar 

  • Reincke CM, Bredenoord AL, van Mil MH (2020) From deficit to dialogue in science communication: the dialogue communication model requires additional roles from scientists. EMBO Rep 21(9):e51278

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Susskind RE, Susskind D (2015) The future of the professions: how technology will transform the work of human experts. Oxford University Press, USA

    Book  Google Scholar 

  • Thaldar D, Shozi B, Steytler M, Hendry G, Botes M, Mnyandu N, Naidoo M, Pillay S, Slabbert M, Townsend B (2022) A deliberative public engagement study on heritable human genome editing among South Africans: study results. PLoS One 17(11):e0275372

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • The Royal Society; National Academy of Sciences; National Academy of Medicine (2020) International Commission on the Clinical Use of Human Germline Genome Editing. Heritable human genome editing. The National Academies Press, Washington, DC

    Google Scholar 

  • WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing (2021) Human genome editing: recommendations. World Health Organization, Geneva

    Google Scholar 

Download references


The work reported in this article was made possible with support from the National Human Genome Research Institute (1R01HG010661-01A1 Cadigan and Juengst, MPIs).

Author information

Authors and Affiliations


Corresponding author

Correspondence to Margaret Waltz.

Ethics declarations

Ethics approval and consent to participate

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients included in the study.

Competing interests

The authors declare no competing interests.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Waltz, M., Flatt, M.A., Juengst, E.T. et al. Public participation in human genome editing research governance: what do scientists think?. J Community Genet (2024).

Download citation

  • Received:

  • Accepted:

  • Published:

  • DOI: