CRISPR Twins: Ethical Time Horizons
We must prepare now to grapple with the unknown future consequences of gene editing.
By Deborah Jackson
After the Three Mile Island accident in 1979, I recall hearing Edward Teller say, “If you think you have made something fool proof, the fool is always bigger than the proof.” What he meant was that despite our best efforts to make a system fail-safe, there is always a chance that capricious human factors will create unexpected decision pathways that undermine our best intentions.
The case for designing a reactor in a way that protects the public from the release of radioactive material is straightforward because the health risks are well understood and the relevant variables affecting the safety protocols tend to be localized and tightly controlled.
The risks associated with our newfound ability to edit genes using the CRISPR/Cas9 tool are not as clear because there is no sense of impending danger to the public. Instead, the unknowns surrounding its potential uses raise the specter of unintended consequences and ethical ambiguities. Furthermore, capricious human factors abound. Nobel laureate David Baltimore defines two major uses for gene editing using CRISPR/Cas9: (1) somatic: editing genes to repair a genetic defect or mutation, such as sickle cell anemia or Huntington’s disease, thereby engineering a cure for an individual, and (2) germ line: editing nondefective genes for the purpose of modifying inheritance. Both “use cases” present unsettled ethical issues.
For research institutions, managing the consequences of somatic editing fits well within the three- to five-year time horizon of the typical research award funding cycle. The ethical time horizons associated with germ line editing, in contrast, are far more expansive because some consequences of editing experiments may not manifest for decades—long after the funding ends and the researchers have turned to other pursuits.
Unlike the tight controls under which nuclear power was developed, genetic editing technology is rapidly unfolding in an unbound environment. Regulatory control is much more challenging because this technology is relatively inexpensive and readily available to many academic research labs.
The recently reported birth of CRISPR-edited twins, genetically modified with AIDS-resistant genes, signals that genetic manipulation has left the realm of science fiction and is now embedded among us. Furthermore, there is enormous pressure to use it before fully understanding how to control it. Although the biotechnology community has outlined a complex set of ethical standards and oversight mechanisms to use when developing editing technology (https://www.ncbi.nlm.nih.gov/books/NBK447266/), the potential for misuse is high because it is unclear what would happen to those who ignore the standards and edit outside of them anyway.
Also unresolved is the potential liability of researchers. It is unclear where the line for unethical behavior will be drawn, who will monitor and enforce it, whether there are some actions or decisions so heinous that they could or would be ruled illegal after the fact, and, if that happened, what form of retribution, if any, would apply.
In the BBC series Orphan Black, science fiction is used to explore the moral implications of gene editing. Wanting to be ethically responsible, the scientists decided to make their experimental clones infertile so that any mistakes would not be passed on to the next generation. That clones might have the same feelings and drive to procreate as humans never occurred to the researchers, who saw them only as patentable intellectual property. An August 2017 Slate article, “Orphan Black Was Never About Cloning,” explores other, more nuanced, ways emerging technologies affect society, policy, and culture.
This ethics dilemma is not limited to biologists. Because the human genome is the blueprint for a complex living organism, complex systems engineering tools are important to understanding its underlying regulatory processes, predicting emergent phenomena, and ultimately reducing the risks. This means that engineers, who are likely to play a role in enabling gene editing, will also share responsibility for the ethical or moral implications of the experimental outcomes.
The call to action for the engineering community is to, first, participate actively in the dialogue on the ethical uses of this technology; second, aim to play a role in setting the ethical standards; and, third, place a greater emphasis on deeper ethical training for upcoming generations of engineers. The future is now, and we must prepare for the social and economic reactions to the game-changing technologies we enable.
Deborah Jackson is a program manager in the National Science Foundation’s Engineering Directorate. The views expressed in the article do not necessarily represent those of NSF or of the U.S. government.