Crowdsourcing the Moral Limits of Human Gene Editing?

Abstract

In 2015, a flourish of "alarums and excursions" by the scientific community propelled CRISPR/Cas9 and other new gene-editing techniques into public attention. At issue were two kinds of potential gene-editing experiments in humans: those making inheritable germ-line modifications and those designed to enhance human traits beyond what is necessary for health and healing. The scientific consensus seemed to be that while research to develop safe and effective human gene editing should continue, society's moral uncertainties about these two kinds of experiments needed to be better resolved before clinical trials of either type should be attempted. In the United States, the National Academies of Science, Engineering and Medicine (NASEM) convened the Committee on Human Gene Editing: Scientific, Medical and Ethical Considerations to pursue that resolution. The committee's 2017 consensus report has been widely interpreted as "opening the door" to inheritable human genetic modification and holding a line against enhancement interventions. But on a close reading it does neither. There are two reasons for this eccentric conclusion, both of which depend upon the strength of the committee's commitment to engaging diverse public voices in the gene-editing policy-making process.

Harnessing the potential of CRISPR-based platforms to advance the field of hospital medicine

“…Among these concerns remains the plight of future generations. Permanently editing the germline will affect unborn children who are unable to consent to such a procedure and its use is currently prohibited [83][84][85]. But that may soon change.…”

“CRISPR babies”: What does this mean for science and Canada?

“…A novel human rights approach would, as Juengst put it, "reorient our conversation from policing science to governing society and would shift our focus from avoiding risks to protecting opportunities." 13…”

Fostering a prevention mindset for responsible gene editing

“…The authors' emphasis on greater social engagement comes at a time when the language around developing international consensus has also subtly but significantly shifted from a call for societal consensus to scientific consensus (Baylis and Darnovsky, 2019). While calls for greater transparency sometimes speak to a movement toward more inclusive science policy, we need greater clarity about what role the public or stakeholders play in scientific governance (Juengst 2017). For example, Jasanoff (2003) highlights the potential for civic voices in scientific governance to temper the kind of scientific hubris exhibited long before the actions of He Jiankui.…”