Why Everyone Freaked about the Chinese Scientist, Dr. He, Editing Babies
by Andrew Olson
In November, Chinese researcher, Dr. He Jiankui, jumped head first into a pool of controversy, carrying one of our most powerful new tools since nuclear fission: the genetic editing technology CRISPR-Cas9. His work, which involved modifying twins embryos to try to increase their HIV resistance jumps headfirst into the morally murky area of “Germline editing” (i.e. making changes that can be passed on to one's offsprings). Genetic modification, both of permanent germs line changes and non permanent somatic cell modification, holds untold possibilities for curing disease and improving human health. Yet Dr. He method and treatment targets make his groundbreaking work ethically problematic. So let's unpack what happened, why his process took so much heat, and how the international backlashes reflect the underlying questions about human genetic editing.
The What: Dr. He’s Experiment
Late last year, Dr. He Jiankui, of the Southern University of Science and Technology in Shenzhen, announced that he had successfully modified the genomes of two human embryos using CRISPR-Cas 9. His presentation came after MIT Tech Review broke the story on his research, which up until that time hadn’t been made public. The CRISPR-Cas 9 system is a new genetic editing tool that allows modification of genes at lower cost and with more precision than ever before. For those interested in learning more about the CRISPR system, I’ll recommend either this video explanation, or this catchy music video. He targeted a gene called CCR5, which some variants have previously been linked to increased HIV resistance. More on this later, first that very sexy topic: research ethics.
Ethics of Research: Don’t Do it in the Dark
When it comes to ground break technology, methodology matters. Science has always faced “the Jurassic Park problem”: ambitious young scientists who are “so preoccupied with whether or not they could, they didn’t stop to think if they should” and as a result, researchers have committed innumerable horrors on vulnerable communities in the name of science.
To try guard against future crimes in the name of progress, the Scientific community requires researchers go through a review process, properly inform their subjects, and publish their results public, peer-reviewed journals. An Institutional Review Board usually acts as the first gatekeepers for adherence to ethical guidelines like handling of animals, minimizing risk to subjects, and informing participants. There are conflicting reports on if Dr. Jiankui properly followed these strict guidelines around institutional process and parental consent and how secret his research was to his fellow. The university claims he forged documents and bypassed processes, including a consent form that state the editing as an aids vaccine trial. However, critics have questioned how such a large project could have been completely off the radar of the university and local authorities.
Through a combination of individuals trying avoid blame after the fact and the project's original secret, it's unclear if the full story and data will ever see the light of day. At worst, Dr. Jiankui abused the trust of his patients and the power of his position for personal glory. At best he enacted a morally murky experiment that is unlikely to contribute to further progress in the field.
Ethics of Research: Don’t do it for the LOL’s
Here’s a crazy idea: let’s not mess around with infants’ genes if we don’t have to. Dr. He claims his modifications would provide the children with HIV resistance, but not only would such resistance be an unnecessary addition, it exposed the children other know and unknown risk. As Chinese bioethics Renzong Qui put it, trying to prevent HIV transmission but genetic editing in this way like trying “to shoot [a] bird with [a] Cannon.” Reams of medical research has gone into HIV prevention and control. If the children's mother was HIV positive-which to be clear they weren’t--medication could have reduced risk of transmission. As adults, condom use and clean needles would have been as if not more effective guard against transmission. Additional previous research has shown that modifications to CCR5 gene (the one Dr. He went and messed with) may make individuals more susceptible to other viruses like West Nile and Influenza. Thus the modification was both unnecessary and created new risks for otherwise healthy children. What happened to “Do no harm?”
Ethics of Editing: Think of the Kids... and Their Kids...
Sitting aside for the moment the fly by night nature of the study and it unjustified premise, Dr. He’s work jumped the gun by making permanent changes that can be passed from parent to child. Conversations about genetic editing often split into those about the modification of “Somatic Cells” and “Germ Line Cells”. Somatic, are things like your bone marrow and won’t be passed on to an individual's offspring. Germ Line changes, on the other hand, will keep being passed down for all generations. In this situation, by modifying the twins as embryos, Dr. He has change their whole DNA including their eventual eggs and therefore children.
Modifying Germ Line cells has far greater ethic weight then modifying Somatic Cells As Francis Collins put it in a talk in February “By editing the germ line of a fetus we are making a decision not only for the unborn child, a thorny issue in and of itself, but also for the possibly infinite numbers of offspring from that child. It's not to...say we should never do this, but rather to point out gene editing comes with different levels of ethical significance.” For example last year, researchers modified the bone marrow of those with sickle cell anemia to help treat the disease. If there are unknown consequences of modification, only the consenting adult will suffer them, not the generations after them. Thus, Dr. He’s work received such criticism because it modified (or attempted to modify) the germ line of his subjects, and all descendants of the twins will bear the consequences without any say in the decision.
Ethics of Editing: Don’t do it for the LOL’s (Reprise)
Much debate about genetic editing revolves around the distinction between medically necessary modification and enhancement. To oversimplify a complex web of issues:
Want to prevent an infant from dying of a terrible genetic condition = Go for it, but let's talk access, affordability, etc.
Want to mess with yourself = Maybe...issues with access, equality, status, etc.
Want to create a designer baby = NOPE and there's several dystopian novels I’d like to point you towards (anyone for a Gattaca movie night?).
Although Dr. He might claim the procedure was for the good of the infants, it ultimately seems more on the side of enhancement. As already mentioned, the they didn’t have HIV and therefore the modification would only have enhanced their resistance to a disease they might never have had exposure to.
The future of genetic editing isn’t here yet, but like the deadline on a midterm, will be here before you know it. Dr. He’s maverick misadventure shouldn’t stop research from progressing, but should point us toward the weighty decision and very real consequences wrapped up in gene editing. We need to protect the vulnerable other from the ego of ambitious researchers. Still, denouncing sloppy science is easy. Finding a collective path forward may not be.
Editor’s note: Modifications were made on 4/2/19 in light of conflicting accounts of Dr. Jiankui’s institutional review process.
Like a proper millennial, Andrew loves Avocado Toast, co-hosts a podcast (The Launch Sequence), and is (cautiously) optimistic about his generation’s chances to fix the world. When not writing about Science, Politics or Young-Adulthood, this weary idealist can be found at his "real job" as a Biological Researcher. In his little free time, Andrew enjoys a good novel or game night with friends. A fan of Mira since it was a glean in his classmates’ eyes, Andrew is excited to help keep the news nuanced, snarky, and aesthetic.