The ‘Perfect’ Baby?: The Dangers of Gene Editing in Assisted Reproduction
An online event — The ‘Perfect’ Baby?: The Dangers of Gene Editing in Assisted Reproduction — brought together bioethicist Françoise Baylis, reproductive justice activist Nourbese Flint, and disability scholar and activist Karen Nakamura to discuss the pressing ethical and social justice concerns regarding heritable gene editing and its intersection with assisted reproductive technologies (ARTs). Co-hosted by the Center for Genetics and Society and UC Berkeley’s Othering & Belonging Institute, and moderated by Osagie Obasogie, the conversation was grounded in the recent report “Engineering for Perfection: The False Promises of Gene Editing in Assisted Reproduction.” The panelists were joined by the report’s co-authors, Meghna Mukherjee and Nairi Shirinian. You can find the full video, transcript, and information on the panelists here.
Following a welcome by UC Berkeley professor of law and public health and CGS Senior Fellow Obasogie, Mukherjee provided a brief summary of the original report. “CRISPR needs to be understood as an assisted reproductive technology,” argued Mukherjee. Discussing these technologies together makes it clear that existing ARTs can be used to accomplish much of what heritable genome editing promises to do. For example, preimplantation genetic testing already provides the option to screen and select an embryo, allowing prospective parents to prevent transmission of an inherited condition. Genetic selection raises its own ethical questions, but these are multiplied by the use of CRISPR for heritable genome editing. While, as Mukherjee pointed out, ARTs remain inaccessible to many on the basis of race or class, they are still safer and pose fewer ethical concerns than heritable genome editing. She offered a brief explanation of these concerns, including the danger of creating a sense of genetic privilege (see more in the clip below), and called for a global ban on the genetic editing of human embryos.
Clip: Meghna Mukherjee situates CRISPR as a reproductive technology
Françoise Baylis, renowned bioethicist and University Research Professor at Dalhousie University, introduced her talk with a reference to “The Lady Vanishes,” Donna Dickenson’s work examining how stem cell research and other new technologies often "fail to see the women.” Baylis stressed that discussions of germline editing must acknowledge and value the crucial reproductive labor of women: “It's important we not see women and their eggs as merely containers.” She also asked us to consider the bodily harm that can result from heritable human genome editing research.
Clip: Françoise Baylis is deeply concerned about bodily harms to women
In addition, Baylis expressed concern at the lack of engagement with civil society regarding heritable genome editing. In her work, Baylis said she’s been advocating for “broad societal consensus” as a way to bring heritable genome editing discussions into spaces beyond the strictly scientific community. “The human genome belongs to us all. It's something we have in common, and so we all have the right to have a say.”
While some scientists argue that using CRISPR for heritable genome editing will inevitably become the norm, and thus the only question is how to proceed, Baylis asks us to consider two things. (1) Decisions regarding heritable genome editing are too great for individual scientists to make alone; (2) if tools like CRISPR are not beneficial to the vast majority of society, why are we prioritizing them? “Heritable germline editing is about changing the next generation,” said Baylis. “It's about creating an individual with specific traits. It's not about treating, curing, or preventing; as such, it's not a therapeutic intervention. It's a reproductive intervention.” In this case, could the resources used to advance heritable genome editing be applied to more productive and beneficial projects? What is left undone while “time, talent, and treasure” are devoted to heritable genome editing research?
Clip: Françoise Baylis asks, “what is being left undone?”
Reproductive justice advocate Nourbese Flint is also concerned with the disconnect between civil society –– as well as the social sciences –– and the so-called “hard” sciences, which are developing gene editing technologies. Do those working on CRISPR understand the broader social implications of their work? Flint reminded us that science is not objective and that personal or institutional biases shape the field. As a society, this requires us to reevaluate our standards. A serious concern about reproductive use of CRISPR is its potential to exacerbate social inequalities by encouraging the idea that certain heritable traits are desired and others are not. Gene editing tools would allow these traits to be either introduced or avoided. But who determines which traits are valued or devalued?
Clip: Nourbese Flint on bias and inequality in scientific research
To conclude, Flint introduced the example of Geordi La Forge, the chief engineer of the Flagship Enterprise in Star Trek: The Next Generation, to explore the ethical implications of heritable genome editing. “He's a black man, he's blind, he's in the fictional world of Star Trek, but he gets to exist,” said Flint. Geordi is not “fixed” or eliminated; instead, the world around him has been adjusted. In making decisions about heritable genome editing, Flint argued, we’re facing a similar decision: “Do we want a world where we have technology that makes sure that someone like Geordi is able to have a full life? Or do we want the technology that ensures Geordi technically never existed?”
After a land acknowledgment of the Huichin Ohlone and other tribes in Oakland, California, the event's final speaker, activist and UC Berkeley professor of anthropology Karen Nakamura, opened her presentation by examining how CRISPR functions in relation to disability and disability justice. “Can disability be seen as value neutral?” asks Nakamura. “Can it ever be seen as an aesthetic choice, rather than purely as a negative difference? What happens if there are communities or individuals or couples who wish to choose disability, not only for themselves but also for their descendants?” In a world where it could be possible to edit out many debilitating and negatively perceived conditions, how should we proceed?
Clip: Karen Nakamura on selecting for disability
Nakamura echoed Baylis and Flint in asking where else we might direct our attention and resources, instead of viewing disability as a problem to be fixed or eliminated. Nakamura argued that in our capitalist society, which values people based on what they can produce or contribute, those who are not able-bodied are assumed to be lesser or unwanted. Pursuing heritable genome editing with CRISPR is both a product and a facilitator of this thinking. The assumption is that we must fix disabled people, but Nakamura posed this challenge: “Can we fix the world itself?”
Clip: Karen Nakamura on disability and CRISPR in a capitalist society