Public engagement for Human Germline Genome Editing (HGGE) has often been called for, for example by the WHO. However, the impact of public engagement remains largely unknown. This study reports on public engagement outcomes in the context of a public dialogue project about HGGE in the Netherlands; the DNA-dialogue. The aim was to inquire opinions and opinion change regarding HGGE. A questionnaire was distributed on a national level (n = 2381) and a dialogue level (n = 414). The results indicate that the majority of the Dutch population agrees with the use of HGGE to prevent severe genetic diseases (68.6%), unlike the use to protect against infectious diseases (39.7%), or for enhancement (8.5%). No indications of change in these acceptance rates as a result of dialogue participation were found. The results did provide a tentative indication that participation in dialogue may lead to less negative opinions about HGGE (χ2(1) = 5.14, p = 0.023, OR = 0.56, 95% CI [0.34, 0.93]). While it was not a goal of the project to make people more accepting towards HGGE, this might be the effect of exposure to opinions that are less often heard in the global debate. We conclude that dialogue may lead to different outcomes for different people, depending on their characteristics and their entrance attitude, but does not appear to systematically direct people towards a certain opinion. The self-reported, impacts of dialogue participation included no impact, strengthening of opinion, enabling of forming a first opinion, more insight into the potential implications of HGGE, and a better understanding of other people’s perspectives.
The Dutch DNA-dialogue was an independent bottom-up initiative of 11 organizations from the Netherlands, including patient representative groups, academic departments in clinical genetics and reproductive medicine, professional associations, a technology assessment institute, the National Institute for Public Health and the Environment, a science communication organization, and the Dutch National Information Center on Heredity. These organizations wrote a project proposal titled “A public dialogue on germline genome editing”. The Dutch Ministry of Health, Welfare, and Sport financed this project but was in no way involved in the design and organization of the dialogues, the collection, and analysis of the data, or the reporting of the results.
Publisher Copyright: © 2022, The Author(s), under exclusive licence to European Society of Human Genetics.