This summer, a group of researchers with affiliations at the MIT, Harvard, the Australian Royal Children’s Hospital, and the Boston Children’s Hospital published a breakthrough paper in Science Translational Medicine with the title “In vivo base editing restores sensory transduction and transiently improves auditory function in a mouse model of recessive deafness” (2020).
While the technical title doesn't evoke much excitement, an alternative title that would have conveyed its information to the general public would be this:
New Breakthrough Towards Curing Infant Deafness
It has been described as "a monumental step toward reversing hereditary deafness in people with a single injection." 2-3 children born out of a thousand have a detectable level of hearing loss.
What would be a cause for celebration has surprisingly led to denunciations of the researcher team (its lead author being chemistry graduate student Wei Hsi Yeh) for being discriminatory against deaf people.
This struck me as absurd. So I dug deeper to find out more.
I learned about this strange incident after reading a blog post by fellow philosopher of science Massimo Pigliucci (see here). He likewise describes feeling "honestly stunned" by an opinion article in Discover magazine by Sarah Katz.
She argues that this research can only be seen as progress if we accept "the assumption that deafness needs a cure. It does not. Though our dominant cultural view of deafness needs a fix."
This struck me as absurd. But I might not be entirely neutral since my research currently focuses on the evolution of health and disease. Instead, I will simply point to Pigliucci's response:
As a biologist I was more than a little surprised by this statement. Deafness is a disability with respect to normal human standards of health. I don’t mean “normal” here as in “superior” (the inflammatory word used by Katz), but simply as within the statistical range of anatomical and physiological functioning of a human being, an evolved member of the primate species known as Homo sapiens. This isn’t an opinion, it’s a fact of nature.
Since these issues are quite complex, I will write a series of blog posts to respond to the question of whether we should cure deafness. However, it seems my prediction in a published academic piece in 2018 is now becoming relevant:
"Imagine a world where everyone is healthy, intelligent, long living and happy. Intuitively this seems wonderful albeit unrealistic. However, recent scientific developments in genetic engineering, namely CRISPR/Cas bring the question into public discourse, how the genetic enhancement of humans should be evaluated morally" (Walter Veit 2018, p. 75)
Veit, W. (2018a). “Procreative beneficence and genetic enhancement” in KRITERION - Journal of Philosophy 32 (1): 75-92. http://www.kriterion-journal-of-philosophy.org/kriterion/issues/Permanent/Kriterion-veit-01.pdf. Accessed 5th of June, 2018.