There’s an age-old ethical proposition: Just because you can do something, that doesn’t mean that you should. This age-old proposition applies in spades to the issue of gene-editing to eliminate certain kinds of hereditary deafness. Thanks to scientific “progress,” a more precise and invasive form of the gene-editing technology known as CRISPR – sometimes dubbed “CRISPR 2.0” – can be applied to specific gene defects that limit a child’s auditory hearing levels, and in some cases render that child completely deaf. Should CRISPR be used to cure deafness?
Wouldn’t all deaf people, if given half a chance, choose to restore one of their elementary five senses and achieve what the hearing majority considers “normalcy”?
In fact, the answer is no.
Deafness is Not a Disability
The notion that genetic editing would be and should be freely chosen by deaf people assumes that deafness is simply a “disability” in need of “correction” rather than a reflection of a naturally occurring genetic diversity that many deaf people believe should be allowed – and indeed, encouraged.
Most deaf advocates these days celebrate their community as a distinctive ethno-linguistic group with its own vibrant and manifold forms of sign language and other communication rituals and patterns and social mores.
Deaf advocates explicitly reject what they call “oralism” and “audism” – that is, the bias in our society in favor of the spoken word that must be “heard” to be understood.
In fact, for many in the deaf community, the promotion of gene editing to remake deaf people in the image of the non-deaf is just the latest technological assault on deafness that began with the promotion of cochlear “implants” in the 1950’s.
Those surgically implanted devices were designed to enhance the ear canal of deaf people to mimic traditional “hearing.” However, cochlear devices don’t work for most of the deaf – in fact, only about 30% can benefit, according to research studies. Hereditary deafness is simply too pronounced in most cases.
Many in the deaf community are critical of attempts in the hearing majority to “normalize” a segment of their community, leaving the vast majority stigmatized for somehow failing to measure up through no fault of their own.
However, that’s precisely why many scientists believe that CRISPR 2.0 gene-editing should be welcomed by the deaf.
In theory, most deaf people with severe auditory hearing problems would likely benefit, they say. Society could still encourage sign language and celebrate deaf “culture” but should all scientific progress be canceled in the name of deaf “solidarity”?
Bioengineering Experiments Underway
The debate over deaf gene-editing has become increasingly urgent ever since news broke that deaf gene-editing experiments were already moving forward, apparently in the absence of proper oversight from medical authorities.
In 2019, Chinese scientists demonstrated the positive impact of gene-editing on the DNA sequence shown to limit the auditory capacities of deaf mice. More recently, Russian scientists claim to have conducted gene-editing experiments on human embryos with signs of incipient deafness.
There are real medical risks here, owing to the potential imprecision of the gene-editing and a lack of clarity on which types of deafness might best be remedied and for whom. It may be that the potential for restoring human hearing across the board has been overstated – one reason more clinical experiments, conducted under the proper protocols, are needed.
News of these early experiments has already produced a backlash that has led to calls for a global moratorium on such experiments pending an examination of potential risks, and the development of a regulatory regime to define the scope of implementation. However, the pressure to move forward from the biomedical companies that stand to profit from gene-editing is clearly growing. At some point deaf advocates will have to decide if they support gene-editing from members of their own community that support the procedure, once its safety and effectiveness are clearly established.
Should CRISPR be Used to Cure Deafness?
There’s another, potentially darker side to this same issue: The possibility that some deaf parents might want to use gene-editing to keep their own children deaf – to preserve their family unity, or out of a misplaced sense of political or genetic “correctness.”
Non-deaf people might find this prospect horrifying, but is it? Once the scope of genetic editing is extended beyond generally accepted disease conditions – like cancer and HIV/AIDS – a Brave New World of possibilities emerges. Which other characteristics of a developing child might be altered to suit the predilections of its parents – for example, height or eye color?
Moreover, there are other diagnosed conditions – such as autism – that like deafness are viewed by some as having redeeming, even positive qualities. Should these also be eliminated through genetic editing whenever they appear, or tolerated and even encouraged in the name of preserving genetic – and cultural – diversity?
Bioengineering – increasingly possible thanks to CRISPR 2.0 – asks us to redraw some of the boundary lines between Nature and Science. Right now science seems to be galloping ahead at a pace that leaves little room for deeper reflection on the medical as well as moral/social consequences. Pulling back on the reins makes sense in the short-term, but excessive delay carries a risk, too; that the healing power of medicine – and the possibility of a better, more fulfilled life – will be denied to the next human generation in the name of ideological principle or simply out of fear of the unknown.