The CRISPR debate: ‘detrimental eugenics’ versus ‘beneficial eugenics’

Twentieth century history has imbued the term ‘eugenics’—literally, ‘good genes’—with ambiguous connotations. In coining the term, Sir Francis Galton defined it as the science that deals with ‘all influences that improve the inborn qualities of a race’ and ‘those that develop them to the utmost advantage’.24 More recently, the term ‘eugenics’ has been given various definitions by bioethicists, ranging from the broad, ‘any policy that alters the composition of the human gene pool’,25 to the narrow, ‘coercion of people's reproductive choices, for social ends, which may include improving the quality of the population, preventing suffering of future generations or reducing financial costs to the state’.26 Early 20th century eugenic efforts to ‘improve’ humanity through genetic intervention led to the tragedies of the Holocaust, the sterilisation efforts in the USA, and other atrocities. In these contexts, ‘eugenics’ connoted the selection for particular traits deemed ‘desirable’ at the expense of any people who had alternative traits. We can designate this representation of ‘eugenics’ as ‘detrimental’.

The consequences of detrimental eugenics obscured the potential for what we might call ‘beneficial eugenics’’ namely, the elective elimination of traits that we can universally find harmful to the individual. Erik Parens of the Hastings Center has furthered this latter understanding of eugenics, suggesting how potential applications of CRISPR can fit into parents' duelling obligations to shape and to accept their children: ‘[I]s eugenics inherently bad? No, not if by eugenics you refer to parents truly, freely choosing to use knowledge of genetics to promote the chances that their children will have good lives. If those efforts could be done safely and effectively, they would be consistent with parents’ ethical obligation to shape their children, and would be good’.27

In light of discussions like Parens' about the long-term efforts by parents to shape their children—that is, beneficial eugenics—the explosion of varied reactions to CRISPR might initially seem disproportionate to the technology's potential promises and pitfalls. Furthermore, our survival and success as individuals and as a society have been, to a fair degree, the product of technological and medical intervention. To fear, rather than to research, debate and refine, an intervention is to stagnate and even threaten the health, longevity and happiness of our species. Indeed, it is how—not whether—CRISPR will be employed by parents to help shape their offspring, and how regulation can ensure that eugenics measures are beneficial rather than detrimental, that must be considered by scientists, ethicists and legislators.

The current constraints on CRISPR research, regulation and application reflect both scientific and societal concern about potential negative effects on our species. Calls for a moratorium on CRISPR research and use,28 ,29 US intelligence officials' unnuanced addition of gene editing to the dangers posed by weapons of mass destruction,30 and media hype and resultant polarised public opinion have overshadowed the technology's realistic and mostly uncontroversial therapeutic potential uses.31–33 Alta Charo warns that gene editing may be at risk of media misrepresentation of its reach and implications. Because ‘[n]ot everyone reads past the headline’,34 both hopes and fears surrounding this technology can become overblown. Those eager for CRISPR's availability might fall victim to a ‘message of hope [that] bolsters the impression that cures are available for other diseases mentioned in media headlines’ and perceive ‘regulatory pathways [as being] too slow’.34 Simultaneously, those dreading the very idea of gene-editing technology are led to anticipate the emergence of ‘designer babies [that are] available only to the rich’.13

It is the latter sort of concern—and, more acutely, the fear that CRISPR ‘raises the specter of Dr Frankenstein's wild experiments and the eugenic goal of designer babies’35 —that has particularly influenced government stagnation with respect to gene-editing research, funding and regulation. The depth of fear even among the scientific community was revealed in the harsh rebuke of David Baltimore's advice to cautiously yet continually revisit the clinical use of CRISPR to conduct germline editing in light of ever-changing science and societal views.36 But as Baltimore points out, a too swift ban on research and even use of CRISPR could have unnecessarily deleterious effects rivalling those feared if it is used problematically; he astutely analogises the potential implications of a CRISPR ban to those of a hypothetical ban on recombinant DNA in the 1970s: ‘we wouldn't have modern biology—and that means we wouldn't have all of the treatments and drugs that have helped us fight cancer and heart disease, increase life spans, and improve the quality of life for so many people’.35 Furthermore, eugenic ‘enhancement’ of complex traits such as intelligence remains generally scientifically unfeasible.35 ,37 If we allow fear to prevent scientific progress towards the therapeutic application of CRISPR, we will permit otherwise preventable pain and suffering to disrupt and even shorten the lives of those with monogenic disorders.

Learning from vaccine controversies

CRISPR appears distinctly more controversial than previous technological innovations (genetic or otherwise), with a greater reach and speed of human treatment and enhancement; however, we have seen similarly inflated hopes and fears in response to other medical innovations for well over a century. One intervention in particular––vaccines––offers a pertinent example of what can go wrong if a technology's reach is shortened due to inflated fears. Like gene-editing technologies, vaccines occupy a liminal position between pure treatment and straightforward enhancement, appearing at first to serve as preventative treatment, but then forcing us to grapple with the question of where treatment ends and enhancement begins. We must remember that vaccines' aim is to provide a protection that we lack originally; they essentially make up for a somatic deficit. So, even though they do not manipulate pre-existing traits, they induce cellular changes that allow individuals to avoid devastating, and even life-threatening, illnesses. By allowing people to avoid (by means of vaccines) or reverse (by means of CRISPR) debilitating or even life-shortening disorders, both technologies harbour the innate power to alter––to improve––individual and societal medical narratives. However, without a legal mandate, these technologies force us to confront the question: Would it be ethical for the scientific community or consumers to refuse the use of these technologies?

By comparing the controversies surrounding vaccines and those surrounding CRISPR, we can discern what detriments to individual and public health can arise when we are overly suspicious.

Applying the lesson of the vaccine controversies to CRISPR

With CRISPR emerging as a new and wide-ranging technology with possible human application in the near future, we can anticipate protests and legal cases analogous to those in the vaccine context. Claims in the vaccine context include allegations both of scientifically disproven causal harm of autism and of scientifically feasible causal injuries included in the Vaccine Injury Table,51 as well as emotional distress and other tort claims not covered by the National Childhood Vaccine Injury Act.52 ,53 Just as ‘a small minority will suffer adverse reactions’ from otherwise beneficial vaccines,53 some recipients of CRISPR gene editing can be expected to experience detrimental results, including those related to off-target effects. Claims centring on CRISPR might similarly include causal harm of unforeseen or unintended injuries by either somatic or germline gene editing, as well as wrongful life caused by germline gene editing, which might be understood to engender entire physical and even emotional and intellectual identity changes sufficient to support a claim that a different identity––a different person––was made to come into existence when it otherwise would (or should) not have.

The vaccine controversies can serve as a harbinger of challenges to come if we cling to fear, and of potential benefits if we cautiously embrace scientific advancements. Will there be a tragedy of the commons, as with vaccines, when herd effects are threatened or thrown out of balance? What will be the implications for decision-making autonomy when choosing—or choosing not—to use a technology? With these concerns in mind, we can briefly revisit Erik Parens' question, ‘Is eugenics inherently bad?’ Can excessive concern regarding CRISPR endanger its ethical regulation and eventual therapeutic application?

At the heart of these questions is the distinction—if we perceive one—between vaccines and gene-editing technology. We must determine what a ‘tragedy of the commons’ in the CRISPR context would imply,54 and whether we can expect our society to find CRISPR less acceptable than it does vaccines. Just as vaccines aim to provide protection we lack genetically, so, too, would CRISPR in its therapeutic application to prevent painful and even life-threatening disorders. With copious evidence of their profound health benefits,55–57 vaccines serve as a seasoned correlate to CRISPR, which has already been used in treatments for cancer and eye diseases.18 ,58–60 (Furthermore, the benefits achievable via CRISPR gene editing applied to the germline could be rendered closer to permanent within a familial line or even society at large: if monogenic diseases are edited out on the germline, gene therapy would be needed for those genetic glitches only if they re-emerge as spontaneous mutations.) Thus, we can reason that to protest the therapeutic application of CRISPR without firm scientific support for doing so is equivalent to––or perhaps even worse than––opposing vaccine administration.

We have already heard some commentators shun CRISPR by insisting on the overarching need to maintain genetic diversity, even if it means that the few—that is, those with severe impairments—suffer physically and emotionally in order to bring that genetic diversity to the species. This speculative argument has been seen before, in the context of preimplantation genetic diagnosis. Others make the more compelling and nuanced argument that if we were to eradicate a gene responsible for an impairment, we would relieve the suffering associated with that impairment but might inadvertently eliminate a beneficial trait located on, or interacting with, the same gene. A clear example of this phenomenon would be the eradication of sickle cell anaemia at the expense of a reduction of protection against malaria.61 Such careful interrogation of the implications of gene editing will only strengthen further research and help refine its eventual application so that the benefits can more heavily outweigh the risks. To deny CRISPR's already known benefits because of its already known risks would be to truncate scientific progress that could result in both an individual and utilitarian good.