Over at Canada’s Impact Ethics blog, feminist bioethicists and disability theorists Teresa Blankmeyer Burke and Jackie Leach Scully reflect on the Russian project to use CRISPR technologies to “correct a mutation that leads to hereditary deafness.” Blankmeyer Burke and Scully apply the Nuffield Council’s principles on genetic modification to consider the issue. These include a requirement of seriousness of the condition. They ask:
But is deafness a “serious” condition that justifies heritable genome editing? If by “serious” we mean something like “severely compromising any chance of having a good life”, the claim that deafness counts as a serious condition is open to challenge. Audiological deafness is highly variable, ranging from mild hearing impairment to almost complete absence of sound perception. Its effects on people’s well-being are similarly variable, and influenced by the surrounding social attitudes, culture and laws, including civil rights protections. Not all deaf people think they are disabled. Many consider themselves to be simply members of a cultural group that uses signed language to communicate. Those who identify strongly with a thriving signing Deaf community can often express a preference for having deaf children and find attempts to prevent the transmission of heritable deafness offensive and horrific.
While the Siberian couples in this case may want to have hearing children rather than deaf children, that alone doesn’t prove that deafness per se is “serious”; there might be many other factors, including cultural attitudes towards deafness and disability, that are influencing their judgements. Additionally, the experience of these individuals is specific to their particular community, context, and time, which are not necessarily those of their future offspring.
Burke and Scully also consider whether the tech is likely to decrease social justice and increase marginalization. They conclude that “It is wildly premature for any scientist to suggest moving forward now, and particularly irresponsible to do so with a condition that at least some affected people consider to be not a “serious condition”, but just a normal variation of human being.”
You can find their complete argument here.
If you want to read more, here is some of Jackie Leach Scully’s work for IJFAB Blog:
- Profiling the genomes of embryos? It (almost) doesn’t matter if it works or not
- “I keep telling you… I can’t get in the building”
- UN investigation into Britain’s violation of disabled people’s rights
- Everything Scully has written for IJFAB Blog over the years can be found at her IJFAB Contributor page
