A baby with incandescent green eyes, a baby stamped with a bar code, another with a glowing gold brain: these are some of the images illustrating stories about the gene-edited twin girls born last November after the world learned of Chinese scientist He Jiankui’s controversial efforts to modify embryos with the CRISPR-Cas9 genome editing tool.
The sensational revelation, questionable ethics and powerful new technologies of gene editing have made He’s research the subject of ongoing fascination and debate. But strikingly absent in the news has been any discussion of where the embryos developed, how the babies came into the world and who will care for them.
That is to say, their mother.
She is nowhere to be seen in any illustration of the “CRISPR babies,” and news coverage mentions her only in passing. Dubbed the “Chinese Frankenstein,” it is as if the rogue male scientist is the twins’ sole creator.
I am a humanities professor who teaches bioethics, disability and culture, and I find discussion with my students increasingly focused on the implications of rapidly unfolding genetic science. I am also the mother of a child with a genetic disability who reminds me, on a daily basis, that genes are only supporting actors in the complex and wonderful drama of my son’s personhood, and an even more minor backdrop to the ongoing labor of parenting. This means that I have a personal, as well as professional, stake in how genetic knowledge is explained and debated in public.
Ignoring the twins’ mother matters for reasons beyond this individual story.
First, it perpetuates a misunderstanding of science. CRISPR-Cas 9 is a revolutionary technology that allows for quick and precise gene editing, with promising applications in agriculture, pest control and biomedicine. But it also has weighty implications because it can introduce heritable, and potentially irreversible, changes in subsequent generations.
The myth of the test tube babies
Of course, there are good reasons to conceal the mother’s identity. He claimed his study was for HIV research and prevention and recruited couples with an HIV-positive male partner and an uninfected female. Such couples were promised fertility treatments in exchange for their participation. Intense stigmas around both HIV and infertility in China are good reason to shroud both parents in secrecy.
Another is the controversial nature of He’s research and the deliberately spectacular way he chose to reveal it. Obscuring the mother’s identity protects her privacy, shielding her family from unwanted and largely negative publicity raging around the experiment. But there is a difference between protecting a person’s identity and obscuring her story. What does the virtual invisibility of a maternal presence say about the twins’ conception, birth and future well-being?