Investigating “Designer Babies” Through the Lens of the He Jiankui Case

In 2019, geneticist He Jiankui was sentenced to 3 years in prison for genetically altering embryonic cells in pregnant mothers. Jiankui and his collaborators implanted modified embryos into pregnant mothers without their consent or knowledge, which was accomplished by misleading doctors and forging ethical review documents. The team’s motive was to prevent the babies–who were children of fathers with HIV/AIDS—from contracting the deadly virus later in life. This was thought to be a stepping stone in preventing HIV/AIDS from being further contracted in much of Africa and other affected regions. With his goal unmet, Jiankui eventually pleaded guilty and was charged with medical malpractice [1]. Although Jiankui and his collaborators represent an extreme case of genetic engineering that blatantly violates engineering codes of ethics, this opens up a broader discussion on the so-called “designer baby,” that is, babies resulting from engineered embryos often altered to be fitter, immuno-resilient, or more aesthetically beautiful. The ethicality of “designer babies” is incredibly complex, but we can ask two questions to help us investigate its implications: Will genetic modification impact a child later in life, and will genetic engineering, specifically the altering of embryonic cells to be genetically “better,” lead to the promotion of eugenics, making the well-intent of such practices ambiguous?

The biomedical engineering and genome editing AMA code of ethics asserts that participants in a procedure involving gene alteration or genetic engineering should “receive the information they need to make well-considered decisions, including informing them about the nature of the research and potential harms involved” [2]. In the case of He Jiankui, it’s easy to argue that by implanting genetically engineered embryos into pregnant women without their knowledge, he and his collaborators were violating ethical principles outlined in the AMA code of ethics. It can also be easily argued that in forging ethical review documents, he violated the fifth fundamental canon of NSPE Code of Ethics for Engineers– to “avoid deceptive acts” [3]. This extreme case clearly illustrates blatant ethical misconduct, but what about in a less extreme case? Or, in the broader scope of designer babies? Can we consider the embryo a participant in the procedure and does it need to consent for the procedure to be ethical? In the case of designer babies, there is no way to inform an embryo that it is becoming genetically modified, but it is a procedure that could change the life of the child when born. However, there is no physical way for an embryo to make a decision, and there is usually no way for babies and young children to make well-informed decisions for themselves. So it is deemed societally ethical for a parent to make a decision for the health of their child. Therefore, the ethicality of designer babies is not a question of whether they can or cannot consent, but rather a more complex discussion on the extremes and spectrum of genetic alteration of embryos.

In one case, an embryo can be altered so that the child, when born, does not have a fatal disease. This could improve their quality of life and usually does not involve direct editing of an embryo, but a selection against certain embryos. Looking at this from a purely consent/non consent standpoint, this isn’t very different from a parent making the decision for their newborn baby to have a life saving procedure. In the Jiankui case if the mother had consented to the treatment, and no documents were forged, it would have been, arguably, an ethical procedure.

We might also use the Jiankui scenario to question whether privilege and wealth might contribute to the unethicality of the designer baby construct. If the genetic alteration of babies were only accessible to the wealthy, it would directly contradict how engineers strive to serve the public interest by worsening wealth disparity. Genome editing costs anywhere from $373,000 to $2.1 million [4]. This is not accessible to everyone. It’s easy to reason that the trajectory of genetic modification in embryos could quickly favor the wealthy. Furthermore, we must continue to consider the implications of wealth and privilege in designer babies and genetic alteration in order to preserve its ethicality. However, as genetic modification becomes more widespread and more extreme, it becomes more difficult to justify this.

The very first fundamental cannon of the NSPE Code of Ethics for Engineers is that engineers should “Hold paramount the safety, health, and welfare of the public” [3]. He Jiankui presumably had the “safety, health, and welfare of the public” in mind; he was trying to create a procedure that would ultimately prevent the spreading of a fatal disease that considerably decreases the quality of life and is most prevalent in developing countries [3]. However, this doesn’t mean that what he did was ethical. Although the motive was ethically sound, the means were not. When investigating what the genetic engineering of embryos could mean on a broader scale, this becomes more complicated. The motive of scientists and engineers when performing a procedure—like altering an embryo—may not correlate with the effect it actually has. The issue of “designer babies” could quickly become an issue of eugenics. People with more money would have the means to alter their children to be better (in any way), which could ultimately lead to social disparities and injustices. However, that’s not to say every instance of genetic alteration will lead to class disparity or a eugenic uprising—it’s a spectrum of extremes and non-extremes. Saving children from life-altering diseases is different from making a child “strong” or “pretty.” So it goes back to the engineer. For genetic alteration to be ethical, the geneticists/ engineers must have the foresight to see how their actions will affect the common good while considering if what they are doing would preserve the “safety, health, and welfare of the public” [3]. In doing so they must not only look at the specific case they are working on, but the broader implications of what they are contributing to.

References

1. Normile, D. (2019, December 30). Chinese scientist who produced genetically altered babies sentenced to 3 years in jail. Science. Retrieved October 22, 2022, from https://www.science.org/content/article/chinese-scientist-who-produced-genetically-altered-babies-sentenced-3-years-jail

2. Biomedical Engineering Society. (2004). ECC. ECC. Retrieved November 3, 2022, from http://www.ethicscodescollection.org/detail/68c82e9b-de0f-448e-b617-96b7e3d89e83

3. National Society of Professional Engineers. (2022). NSPE Code of Ethics for Engineers. National Society of Professional Engineers. Retrieved October 22, 2022, from https://www.nspe.org/resources/ethics/code-ethics

4. Muigai, A.W.T. Expanding global access to genetic therapies. Nat Biotechnol 40, 20–21 (2022). https://doi.org/10.1038/s41587-021-01191-0

5. O’Reilly, K. B. (2017, August 4). Genome editing and the AMA Code of Medical Ethics. American Medical Association. Retrieved November 3, 2022, from https://www.ama-assn.org/delivering-care/ethics/genome-editing-and-ama-code-medical-ethics