Chinese scientist He Jiankui’s decision to genetically modify newborns using CRISPR technology has drawn harsh criticism from the scientific community. Jiankui’s decision to edit the genomes was motivated by a desire to prevent future disease and other potential harms, however, the ethics backing his experiment seem weak at best. CRISPR, a gene editing tool, is a relatively new scientific development in which RNA segments and enzymes are used to identify and modify DNA sequences and add or remove genetic material. This undertaking by Jiankui appears to be morally justified when considered at face value, because the driving factor was to eliminate disease, but when the principles of bioethics are applied to this case, the ethical justifications become substantially less supported. The long-term consequences of experiments like this mean a potential reduction in the richness and variety of human life.
Is Gene-Editing the Same as Eugenics?
Although gene-editing appears similar to eugenics in that both imply a change in human genomes, there can be a clear moral line drawn between the two terms. Eugenics, a practice undertaken in Nazi Germany in an attempt to create what Hitler thought of as the “perfect human”—a person with blonde hair and blue eyes—was morally problematic because it meant that a large portion of the healthy human population should be culled. In contrast to this, gene-editing is a field that remains more ethical in nature, because, unlike eugenics, it is meant to eliminate disease and help the person that it is applied to. Reducing disease seems like an objectively ethical undertaking because it means less suffering in the patients that it is applied to, similar to the function that antibiotics perform. However, the ethicality becomes less clear when one considers the question of eliminating conditions like deafness, blindness and Downs syndrome. If CRISPR technology were used to eliminate Down syndrome, for instance, it does not seem as ethically clear cut as removing predispositions for cancer, because there is an entire community that says that Down syndrome is not merely a disability, but is a rich way of being. The use of CRISPR to remove Down syndrome would not necessarily be beneficial, because it would remove some of the diversity of the human condition.
Applying the Principles of Bioethics
When examining whether or not this case of genome editing on behalf of the Chinese scientist was ethical, it is useful to apply the four components of bioethics. The first component involves beneficence, which deals with the benefits that a potential participant would receive as a result of the experiment or medical trial. The other three pillars involve non-malfeasance, or the promise to do no harm to a participant, as well as autonomy and justice. Autonomy and justice both deal with the participant’s ability to choose whether to participate as well as ensuring that studies are conducted fairly and equally without exploiting the research participants.
When it comes to the Chinese scientist’s use of CRISPR on newborns, from a beneficence standpoint, it seems that gene-editing newborns does not provide a clear benefit because people still are not sure how or if CRISPR actually works and there is no clear unmet medical need.
If you look at this case from a justice standpoint, it also appears that gene-editing does not equally benefit the people that it is performed on, because it seems that the parents who would agree to these experiments would be from lower-class backgrounds.
In addition to failing to meet beneficence and justice, it is arguable that gene-editing in this case also does not meet autonomy standards. It seems unlikely that, as a response to the doctor or physician saying that there is something wrong with the newborn that needs to be corrected, parents would refuse to follow the doctor’s advice, particularly because the doctor’s opinion carries such authoritative weight. Because the doctor in this specific instance had a higher authority than the parents, it does not seem that the parents had full autonomy in deciding whether or not to subject their child to the CRISPR experiment.
The Chinese scientist performing the genome editing experiments on newborns was in the ethical wrong, and does not seem fully justified in his undertaking, despite the potential positive consequences that his experiment could hold for the babies. CRISPR technology holds the potential to cure genetic diseases, however, the ethical quandaries that surround it seem to be justified—particularly in the case of He Jiankui’s experimentation on newborn babies.