Genome editing: lecture explores the ethical, legal, and social implications

The panelists brought up many bioethical considerations to remember as gene editing moves closer to reality. 

The panelists brought up many bioethical considerations to remember as gene editing moves closer to reality. 

Image By: Alejandra Canales

The Crossroads of Ideas is a monthly lecture series that explores complex social science issues by bringing together UW-Madison experts across disciplines in a public forum.  In the most recent session on Tuesday night, “From CRISPR Twins to Real Therapies: The Future of Genome Editing,” members of the UW-Madison community gathered in the Discovery Building to contemplate the ethical, legal, and social implications surrounding this emerging technology. The discussion was moderated by Dominique Brossard, professor and chair of the Life Sciences Communication Department.

As biomedical engineer Kris Saha explained, genome editing is not new. However, the technology to make changes in an organism’s genome has become much more accessible to researchers since the CRISPR-Cas9 discovery in 2013. CRISPR relies on using a short guide RNA sequence to direct the Cas9 protein to cut at a specific region of interest within the genome. Scientists can then introduce changes into the genome by adding a DNA sequence that serves as a template for cells to repair the cut. 

In addition to the possibility of direct injections into patients as therapies for diseases like retinal disorders, sickle cell, and muscular dystrophy, other potential applications involve using CRISPR as a research tool to aid in drug screening, toxicology, and other basic biological questions. Furthermore, according to laboratory director of Generations Fertility Care Jeffrey Jones, the technology could be easily incorporated into routine in vitro fertilization procedures, with appropriate checks on embryo development, to edit the germline and create inheritable changes to the human genome.

Bioethicist Pilar Ossorio elaborated by explaining how the differences between somatic cell editing, or changes that affect the person being edited, and germline editing leads to ethical concerns beyond the familiar questions regarding when a technology is safe enough for use in humans. 

“That raises a lot of questions about how would you detect the long-term effects, effects that might happen one or two generations down the line? How do you keep some kind of observation of offspring of the person that you modified? How do you do that in a way that respects that person’s autonomy?” Ossorio said.

As bioethicist Alta Charro noted, those sorts of concerns were clearly not at the forefront of Chinese scientist He Jiankui’s mind when he decided to use CRISPR to create twin baby girls he claimed would be HIV-resistant due to a small deletion in the CCR5 gene. He also did not have enough scientific evidence to justify that making such a modification in human embryos would be safe, effective, or even necessary. Furthermore, when he presented his work at the International Human Genome Editing Summit last November, other scientists realized that he had not succeeded in making the intended edits and that each girl had different edits. The fallout from He Jiankui’s work has now spurred a global effort to figure out how to deal with the actions of “rogue scientists”.  

Infrastructure at many transnational and national levels exists to deal with implementing specific policies, and Charro mentioned the increased interest in forming new international governance bodies to gather information about ongoing research, review research protocols, and convene public debate. Jones reminded the audience that in the U.S., implanting embryos into a human uterus falls under the FDA’s jurisdiction, meaning the researcher would be subject to civil and criminal penalties. At the institutional level, oversight committees approve protocols, and Dietram Scheufele, a professor in the Life Sciences Communication department, argued that universities are also uniquely positioned as highly trusted and respected institutions within a community to stage public debate.

Scheufele also cautioned against reducing the complexities surrounding the use of CRISPR in humans to simply the technical and scientific.

“There’s some opposition that’s clearly based on not getting the science right, and our job is to make sure we have the best available science to inform those debates, but the outcome of those debates very often is a political question that needs to be decided in international regulatory bodies, that’s [the World Health Organization] or wherever else, or in political fora,” Scheufele said. “I think that’s really where the solution lies.”

As Scheufele and Ossorio both noted throughout the evening’s discussion, accessibility to genome editing technology will become a bigger issue moving forward, especially in a country like the United States, where healthcare is not equitably distributed. For diseases like sickle cell, some patients struggle to pay for the recommended treatments.

“I think we have a whole set of questions that have to do with justice and fairness,” Ossorio said. “Who will have access to these technologies? Will there be sort of ‘biologizing’ social inequality in a way that we haven’t done before?” 

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