Initial public outcry over a novel medical technology isn’t anything new: vaccines, transfusions, transplants, recombinant DNA, in vitro fertilization, preimplantation genetic diagnosis, GMOs, gene therapy – the list is long.
But genome editing, using tools such as CRISPR, seems to have struck a public nerve in a more profound way, largely because of the reported rush to tinkering with human fertilized ova, an intervention that would alter the genomes of future generations.
But what does the public really understand about “clustered regularly interspaced short palindromic repeats,” aka CRISPR? It’s fairly complicated to follow the details – the choreography of DNA, RNA and proteins; nuances of repeated and unique DNA sequences; details of recombination and DNA repair.
But a PhD certainly isn’t necessary to ponder the consequences of the ability to modify the human germline – the DNA that’s passed on to future generations.
A carefully designed and tested questionnaire
In a paper in the January 2019 issue of Human Gene Therapy, Alex Hewitt, of the Menzies Institute for Medical Research at the University of Tasmania, a professor of ophthalmology who also has a PhD, and colleagues probed the reasons behind public perception of human gene editing.
The study actually began with a 17-item questionnaire launched in 11 languages in June 2015 with ads on Facebook, Twitter, Google and WeChat.
It attracted responses from 185 countries from 12,562 people, who ranged in age from 11 to 90 (average 32), and were 37 percent female. Initial analysis led to a 2016 study, A Global Social Media Survey of Attitudes to Human Genome Editing, published in Cell Stem Cell.
The survey was carefully worded to avoid possibly emotional terms, such as “enhancement,” “augmentation,” and even “CRISPR,” using “genetic engineering,” “gene editing,” “genetic editing” and “genome editing” synonymously.
The basis of the new analysis is 3,988 “textual responses,” in which people answered the open-ended query in item 17: “Please describe the factors that have influenced your response or attitude toward human gene engineering.”
The researchers drew intriguing inferences from respondents’ word choices.
Iterations of the survey asked people what they thought each question meant, allowing the researchers to refine and improve clarity.
For example, in “’thinking-aloud cognitive phase testing,’ “we found that the message of the question was aided by the inclusion of the phrase: ‘This means that all future generations would not have the disease.’
So we hoped that this statement would convey the fact that genetic editing of an embryo would affect subsequent generations, as opposed to somatic editing, which clearly would not,” Dr. Hewitt told Genetic Literacy Project, referring to modifying cells from children or adults.
The first seven questions collected demographic info. Then a few questions probed family history of genetic disease, and then the all-important distinguishing embryos from children or adults.
The next five questions asked how much the person agrees with the use of gene editing of cells in children or adults to “cure” a life-threatening disease or a debilitating disease, then editing embryos to “prevent” a life-threatening disease or a debilitating disease, with the fifth question concerning using the technology on embryos for a “nondisease characteristic” such as eye color, height or memory.
The design of the questions distinguishes effects before and after birth and each has a qualifier: “This means that the disease could still be passed on to their children” following the intervention in children or adults,” for example.
It uses plain language to distinguish somatic from germline intervention, assuming that by “embryo” the researchers mean “fertilized ovum” so that all cells are affected.