The Pros and Khans of Genetic Engineering

He Jiankui, a Chinese researcher, stunned the world when he announced that he had successfully edited the DNA of a viable human embryo and, in doing so, created the first gene-edited babies. Scientists all over the world lost their minds, and the news media followed suit. Then, Jiankui seemingly disappeared without a trace.

It seems safe to say that we are not quite ready for this kind of experimentation. While scientists have spent decades exploring the human genome and developing methods for viewing, understanding, and modifying genes and DNA, researchers have only recently developed the ability to modify genes in a controlled fashion and in a cost-effective way. The technique, dubbed CRISPR (which is short for “clustered regularly interspaced short palindromic repeats”), essentially allows scientists to splice custom DNA code into a cell. The recent Chinese experimentation is the first time that CRISPR was used to change the DNA of a baby prior to its birth.

Until now, this kind of gene modification was viewed as theoretically possible but was widely regarded as years away from viability. Now, the technical and ethical limitations of human genetic modification have been brought to the fore, and there is no shortage of concern. The ethical concerns are especially prominent given that Jiankui’s experiment was not entirely successful and was conducted under dubious circumstances.

The ethical concerns surrounding Jiankui’s experiment, and others like it, are plentiful. Do you need informed consent to modify the DNA of unborn children (and what does that even mean?) Since genes often have multiple functions, how do we know that a DNA modification won’t have unintended consequences? How confident does one need to be regarding the unintended consequences of a DNA edit? Will the experiment of a single rogue scientist have a political backlash that will set others back decades? How should the ethical standards change for DNA edits that will be passed on to children (germline edits) versus edits that only affect one person (somatic edits)?  Is it okay to use DNA editing to create enhanced abilities (e.g., better vision), or only to prevent or cure a negative disease or condition? Who gets to decide whether a disease is negative? And so on. Each of these questions is tricky, and each could easily sustain a full debate in and of itself.

Over the past few decades, the United States has adopted something of a skittish approach to human genetic engineering. While genetic engineering is not technically illegal, there are at least three major obstacles standing between a U.S.-based scientist and a human genetic engineering experiment. First, a recent statute prohibits federal funds from being used to support germline experimentation. Second, any tests that qualify as “clinical” may only proceed with FDA approval, and the FDA is prohibited from approving any trial or application involving germline modification. The FDA also seems fairly reluctant to approve somatic gene therapy treatments involving the use of CRISPR.  Finally, any research involving human subjects that is sponsored or hosted by an organization that receives federal research funding is required to obtain approval from an “institutional review board,” which is not likely to approve projects that pose unreasonable or unknown risks to human test subjects.

In a sense, these obstacles aren’t all that significant. As the Chinese experiment demonstrates, other countries have different rules regarding genetic experimentation, and ambitious scientists can follow the path of least resistance by simply conducting their research in a country with less stringent rules. Even in the United States, it is conceivable that one might be able to obtain funding from private donors, or even from state governments. Moreover, the military has its own regulations for human testing and there is no way to know what kind of top secret projects, if any, are currently in the works.

The world of science fiction is no stranger to the prospect of genetic engineering, and countless stories over the years have considered many of the difficulties that it could cause and how it would be regulated. As we consider what the future holds for CRISPR and other techniques yet to be developed, it is worth considering a few rich fictional histories to see what, if any, insights we can extract.

In this article, I will discuss two of my favorites  which reflect different regulatory schemes regarding human genetic modifications: early 20th century Star Trek (the Eugenics Wars) and 24th century Star Trek (the aftermath of the Eugenics War).

Before delving into the details, it’s worth noting the obvious fact that as science fiction the stories at the center of this analysis do not purport to reflect an accurate world and, as a result, each reflects an extreme position that, for the most part, lacks nuance. In that sense, these make for an informative thought experiment, since they allow us to test out extreme ideas.

The Eugenics Wars (Late 20th Century Star Trek)

Star Trek’s Eugenics Wars reflect the nightmare scenario of unregulated and unrestricted human genetic experimentation. The scenario itself is simple: a group of human scientists used genetic engineering to create a race of “supermen” who were substantially stronger and smarter than normal humans. While there weren’t many of these supermen, their physical and mental advantage was so strong that they were able to take over the world and enslave the “normal” humans. In the late 1990s, the normal humans eventually rose up and, after an extended and devastating world war, regained control of the planet. The wars were first described in the fan-favorite Star Trek: The Original Series episode “Space Seed,” where Captain Kirk revives Khan Noonien Singh — whose name you are now yelling in your head — the leader of the supermen.

I see two major takeaways from the Eugenics Wars. First, and most importantly, the story highlights the fact that physical and mental superiority are distinct from emotional superiority. The supermen at the center of the war were undoubtedly stronger and smarter than all of the other humans on the planet. But as Spock explained, “superior ability breeds superior ambition.” While the scientists were able to overcome all technical obstacles in their genetic modifications, they failed to account for how their modifications would interact with the “human condition.”  

The takeaway: Scientists should consider the sociological impact of their work and how individuals with genetic modifications will interact with others in society.

Second, the story reflects a deeply held human fear of overstepping our limitations. . Many debates about human genetic experimentation involve some argument amounting to “we shouldn’t play god,” or “humans were designed this way for a reason.” I view the Eugenics Wars as a version of this argument, almost like a fable in which the moral is “the universe will punish you for meddling in matters beyond your understanding.” I think this argument is a red herring — a stand-in for a different, less comfortable position. The boundaries for what it means to “play god” are not well-defined, and so any rigorous attempt to consider the argument inevitably reduces to “this kind of science makes me uncomfortable.” The question then is why. And while there is no clear answer to that question, the Eugenics Wars suggest an answer — if genetically engineered humans are better, then it follows that normal humans are worse. And the idea that we, as a species, might be inadequate is deeply unsettling and, to many, provides a sufficient reason to avoid the field entirely. This also explains why many people are more comfortable with the prospect of curative genetic engineering (i.e., fixing an “illness” or abnormality) than they are with the prospect of genetic enhancements.

The takeaway: Any discussion regarding genetic engineering law or policy should take into account human insecurities and fear of obsolescence.

Post Eugenics Wars (24th Century Star Trek)

The massive world war surrounding genetic experimentation had lasting consequences on the Star Trek universe. Following the Eugenics Wars, there was a planetary-wide ban on human genetic engineering. Later, this ban expanded to apply to all members of the United Federation of Planets. Whereas the Eugenics Wars reflects a genetic engineering free-for-all, the 24th century reflects the opposite — no genetic engineering whatsoever.

The problem, though, comes with enforcement. While the Federation enforced strict penalties on lawbreakers, those penalties didn’t stop everyone. This theme is explored in a series of episodes from Star Trek: Deep Space Nine in which it is revealed that Dr. Julian Bashir, the station doctor, had a learning disability and that his parents arranged for him to obtain an illegal genetic enhancement. While Dr. Bashir and his family kept the enhancement a secret, the authorities eventually discovered the truth. Under Federation law his parents would be imprisoned and he would lose his medical license and be expelled from Starfleet, but the Federation decides to ignore its policies and allow Bashir to retain his license and commission. In a future episode, it’s explained that Bashir was lucky since illegal procedures of the kind he received typically were unsuccessful and caused permanent and severe cognitive disabilities.

Once again, I will discuss two takeaways (though there are many more one could draw from these and similar episodes). First, these episodes highlight a huge risk that laws regarding genetic engineering could lose track of real-world human incentives. Making something illegal doesn’t mean it won’t happen — it just means that it will happen in the shadows without oversight. We have seen this problem in the real world when it comes to abortions — in third-world countries, 75% of all abortions are unsafe largely because abortion is illegal in many of those countries. The post-Eugenics Wars exploration of genetic engineering shows that the question of genetic enhancements (whether somatic or germline) is more than just an ethics question — it’s a policy question and policy questions rarely have simple, absolute answers.

The takeaway: It is important to consider how living, breathing humans will respond to policies regarding genetic modifications. Empathy is essential when setting policy and penalties.

Second, the plight of Bashir and other genetically enhanced individuals highlight the fact that, as genetic engineering becomes more prevalent, policies regarding genetic enhancements will inevitably grow to affect not just scientists who conduct genetic work but also the people who are affected by the genetic work. This is true in both a direct and indirect sense. There is a direct effect because the policies could substantively affect the rights of modified individuals or their loved ones. This direct effect was made explicit in the Deep Space Nine episodes  but there is also an indirect sociological effect caused by how society at large responds to the law. There is a growing body of research that shows that the law shapes perceptions of the world. Consider the kinds of difficulties or stigmas someone like Bashir would experience even in the absence of any official legal enforcement. The fact that his genes are, in a sense, illegal could (and in fact did) cause a bevy of mental and social insecurities and adversely affect his relationships with those around him. We see a similar effect when it comes to “illegal” immigrants — people who, because of a legal status definition, carry significant social baggage and stress.

The takeaway: Humans are complex social creatures, and laws, rules, and regulations shape our interactions with each other and with ourselves. Whatever approach we adopt regarding genetic experimentation, we should take great care not to stigmatize or burden people for carrying what could be irreversible or involuntary genetic modifications.

Putting It All Together

One of the primary concerns people have with genetic modification is that the technology just isn’t ready for reliable use. That may be true, but individuals who advocate for legal prohibitions or limitations on genetic modifications have a problem of their own. As seen from the stories described above even simple rules or regulations can have unintended lasting consequences. As a result, the issues associated with the regulation of genetic modifications are essentially the same as those associated with genetic modification itself — both produce significant ethical concerns, defy simple resolution, and could easily cause more problems than they solve.

The takeaway: It’s not enough to say “ban it” or “regulate it” or “control it.” The legal landscape is far too complex and lends itself to too many unexpected consequences. As a society, we must think deeply about the rules and regulations we adopt and must engage in considerable introspection regarding the reasons for our rules to make sure that we are acting responsibly, empathetically, and, as Mr. Spock would tell us, logically.

 

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Adam Adler

Adam Adler is a lawyer, comic book fan, and stand-up comedian based in Washington, D.C. Feel free to contact Adam via e-mail at [email protected]

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