Justice-based considerations are some of the most important, yet unresolved, ethical issues surrounding human genome editing, including affordability/access, ensuring that existing gaps between the rich and the poor are not exacerbated, and ensuring protections for people who choose not to use gene editing from genetic discrimination. There have been widespread calls for meaningful public engagement about the ethics of gene editing (e.g. Adashi, Burgess et al. 2020). We argue that public engagement about human gene editing does more harm than good with respect to promoting justice: Public engagement about gene editing (1) is very expensive and time-consuming, and its value is often overstated (Rhodes and Ostertag 2023); (2) is not necessary in order to identify or understand the most pressing justice-based concerns; (3) is unlikely to do anything to resolve justice-based concerns in practice; and (4) there are potential significant harms that could arise precisely because the public has been “meaningfully engaged” regarding the ethics of gene editing, e.g. the risk of public engagement ‘standing in for’ genuine protection for marginalized people, who are vulnerable to being disadvantaged or otherwise harmed. If public engagement about gene editing occurs, it should be supplemented by initiatives that will actually help promote justice. For example, developing plans for making gene editing affordable and accessible, educating health care workers about “genetic discrimination”, and implementing protections for people who may be unjustly discriminated against because of their decisions to (not) use therapeutic gene editing once it becomes a more pronounced aspect of health care delivery.
Authors: Ryan Tonkens, Lakehead University, Centre for Health Care Ethics; Maria Klimenko, Lakehead University
