In November 2018 a controversial public announcement was published on YouTube by He Jiankui, a biophysics researcher at the Shenzhen University of Technology, China. He and his team had carried out a gene editing experiment on selected human embryos, and subsequently delivered them through IVF (in vitro fertilisation). They had produced the first human genetically engineered babies; twins named Nana and Lulu.
The donor parents had been selected from a group of HIV positive applicants and offered IVF in exchange for permission to carry out the edit, the goal being to prevent paternal inheritance of HIV. The team’s objective was to target the CCR5 gene to produce a mutant protein less susceptible to the disease. However, during this process the team broke medical regulation by forging ethics documentation approving the trial, and for having potentially coerced the couple into participation.
The news of the experiment was met with public outcry across the world as genetic researchers condemned the development as being far too premature, and for He’s failure to disclose his activities with other medical staff involved as well as his own bosses. Subsequently, in November 2019, He Jiankui was sentenced to three years imprisonment.
One of the major concerns expressed by the scientific community was the number of unknowns involved in the genetic manipulation of an embryo. He Jiankui had used a recently developed technology called CRISPR-Cas9 to perform the editing, and there is still ambiguity over the specificity of its activity – we do not know for sure that this enzyme did not cleave the DNA in other sites of the babies’ genomes and create unexpected mutations off target, or that the edit made to the CCR5 gene was in fact effective. Any unpredictable repercussions are now part of the children’s somatic and germline DNA, which means any mistakes will be passed onto future generations.
It is this possibility which makes the team’s actions so reckless and irresponsible; not because of its aims, but because it employed a technology which is not completely understood and may now have a serious negative impact on the lives of the twins and their own offspring. Some scientists, however, contend that the technology has been proven to be specific enough in its mechanism, and that in truth CRISPR is more reliable than our own organic genetic replication machinery. The fact remains that not enough research has been carried out regarding its possible side effects in humans.
The risk factor will become lower and soon it might be common to think that it is more ethically questionable not to treat an underlying condition if we have the means to do so.
Another factor to consider is how this story reflects on the scientific community. Although this consideration may seem trivial, He’s actions may have a serious backlash on the progress of research for this branch of medicine. CRISPR has certainly been shown to be a promising tool and it would be a mistake to cut off all research around embryonic gene editing. However, there is still the concern that this technology is relatively cheap and accessible, and there are not many barriers in place to prevent other rogue incidents whereby a researcher abuses the tools.
Some think that He’s actions may have opened the floodgates for a chaotic exploration of gene editing, prompting the crossing of the boundary from medical to cosmetic applications or, worryingly, triggering the eventual emergence of ‘Designer Babies’.
It’s easy to imagine how the development of designer babies could lead to further inequality and social division.
In one of the biomedical lectures I attended this semester, the lecturer put up a poll asking us to declare where we stood on the use of genetic engineering in humans. The overwhelming consensus was that its use should be approved in somatic cells (non-embryonic) for untreatable conditions. However, as time passes and the technology rapidly improves, our stance may well change. The risk factor will become lower and soon it might be common to think that it is more ethically questionable not to treat an underlying condition if we have the means to do so, even if it’s not necessarily life-threatening.
Before we get to this point, we, as a global community, need to be discussing where the lines should be drawn regarding the humane application of this technology. It’s easy to imagine how without some boundaries in place, the development of designer babies could lead to further inequality and social division. What we need is an open discussion around gene editing, as well as the development of a clear guideline which we can all contribute to, so that we can hit the ground running once the technology is approved for public use. Let’s start the conversation and establish for ourselves what our medical and cultural future will look like.
Written by Marlon Jasielczuk-Lando and edited by Ailie McWhinnie.