Should germline genome editing be allowed? The effect of treatment characteristics on public acceptability

Abstract

STUDY QUESTION To what extent do characteristics of germline genome editing (GGE) determine whether the general public supports permitting the clinical use of GGE? SUMMARY ANSWER The risk that GGE would cause congenital abnormalities had the largest effect on support for allowing GGE, followed by effectiveness of GGE, while costs, the type of application (disease or enhancement) and the effect on child well-being had moderate effects. WHAT IS KNOWN ALREADY Scientific progress on GGE has increased the urgency of resolving whether and when clinical application of GGE may be ethically acceptable. Various expert bodies have suggested that the treatment characteristics will be key in determining whether GGE is acceptable. For example, GGE with substantial risks (e.g. 15% chance of a major congenital abnormality) may be acceptable to prevent a severe disease but not to enhance non-medical characteristics or traits of an otherwise healthy embryo (e.g. eye colour or perhaps in the future more complex traits, such as intelligence). While experts have called for public engagement, it is unclear whether and how much the public acceptability of GGE is affected by the treatment characteristics proposed by experts. STUDY DESIGN, SIZE, DURATION The vignette-based survey was disseminated in 2018 among 1857 members of the Dutch general public. An online research panel was used to recruit a sample representing the adult Dutch general public. PARTICIPANTS/MATERIALS, SETTING, METHODS A literature review identified the key treatment characteristics of GGE: the effect on the well-being of the future child, use for disease or enhancement, risks for the future child, effectiveness (here defined as the chance of a live birth, assuming that if the GGE was not successful, the embryo would not be transferred), cost and availability of alternative treatments/procedures to prevent the genetic disease or provide enhancement (i.e. preimplantation genetic testing (PGT)), respectively. For each treatment characteristic, 2–3 levels were defined to realistically represent GGE and its current alternatives, donor gametes and ICSI with PGT. Twelve vignettes were created by fractional factorial design. A multinominal logit model assessed how much each treatment characteristic affected participants’ choices. MAIN RESULTS AND THE ROLE OF CHANCE The 1136 respondents (response rate 61%) were representative of the Dutch adult population in several demographics. Respondents were between 18 and 89 years of age. When no alternative treatment/procedure is available, the risk that GGE would cause (other) congenital abnormalities had the largest effect on whether the Dutch public supported allowing GGE (coefficient = −3.07), followed by effectiveness (coefficient = 2.03). Costs (covered by national insurance, coefficient = −1.14), the type of application (disease or enhancement; coefficient = −1.07), and the effect on child well-being (coefficient = 0.97) had similar effects on whether GGE should be allowed. If an alternative treatment/procedure (e.g. PGT) was available, participants were not categorically opposed to GGE, however, they were strongly opposed to using GGE for enhancement (coefficient = −3.37). The general acceptability of GGE was higher than participants’ willingness to personally use it (P < 0.001). When participants considered whether they would personally use GGE, the type of application (disease or enhancement) was more important, whereas effectiveness and costs (covered by national insurance) were less important than when they considered whether GGE should be allowed. Participants who were male, younger and had lower incomes were more likely to allow GGE when no alternative treatment/procedure is available. LIMITATIONS, REASONS FOR CAUTION Some (e.g. ethnic, religious) minorities were not well represented. To limit complexity, not all characteristics of GGE could be included (e.g. out-of-pocket costs), therefore, the views gathered from the vignettes reflect only the choices presented to the respondents. The non-included characteristics could be connected to and alter the importance of the studied characteristics. This would affect how closely the reported coefficients reflect ‘real-life’ importance. WIDER IMPLICATIONS OF THE FINDINGS This study is the first to quantify the substantial impact of GGE’s effectiveness, costs (covered by national insurance), and effect on child well-being on whether the public considered GGE acceptable. In general, the participants were strikingly risk-averse, in that they weighed the risks of GGE more heavily than its benefits. Furthermore, although only a single study in one country, the results suggests that—if sufficiently safe and effective—the public may approve of using GGE (presumably combined with PGT) instead of solely PGT to prevent passing on a disease. The reported public views can serve as input for future consideration of the ethics and governance of GGE. STUDY FUNDING/COMPETING INTEREST(S) Young Academy of the Royal Dutch Academy of Sciences (UPS/RB/745), Alliance Grant of the Amsterdam Reproduction and Development Research Institute (2017–170116) and National Institutes of Health Intramural Research Programme. No competing interests. TRIAL REGISTRATION NUMBER N/A.

Students’ attitudes towards somatic genome editing versus genome editing of the germline using an example of familial leukemia

“…There has been consistently greater support for treatment than for enhancement and for the intervention in adults than in unborn children. This strong opposition towards enhancement was also observed in a Dutch adult population in 2018 (van Dijke et al 2021 ). The study by van Dijke et al ( 2021 ) has concentrated on germline genome editing and has shown that the possibility to treat congenital abnormalities positively influenced the attitude towards genome editing.…”

“…This strong opposition towards enhancement was also observed in a Dutch adult population in 2018 (van Dijke et al 2021 ). The study by van Dijke et al ( 2021 ) has concentrated on germline genome editing and has shown that the possibility to treat congenital abnormalities positively influenced the attitude towards genome editing. Intervention in the human germline for non-preventive and non-therapeutic purposes (i.e., to only “improve” humans) has clearly been rejected by the European States in the Oviedo Convention (Council of Europe 1997 ).…”

The Public Perception of the #GeneEditedBabies Event Across Multiple Social Media Platforms: Observational Study

“…Similarly, Japanese users generally accepted the use of genome editing for disease-related genes; however, many were concerned about its risks [ 49 ]. Although many Dutch adults responding to a survey considered the risks of GGE to be substantially greater than its benefits, they may approve of using GGE if it is sufficiently safe and effective and used for a disease instead of enhancement [ 50 ]. In addition, another survey based on the responses from 1537 participants across 67 countries (87% of whom were White and mainly from the United States, Australia, Canada, and the United Kingdom) found that respondents generally supported GGE for medical applications, and resistance was mainly reported by people with religious beliefs or working experience in genetics [ 51 ].…”