Unpacking Gene Editing: Is Editing the ‘Deaf’ Gene Ethical?

There may be a way to ‘delete’ the deaf gene. But do deaf people want this? 

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Scientists have discovered a way to alter and delete the deaf gene. But do deaf people want this?
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(On International Day of Disabled Persons 2019, FIT is reposting stories of exceptional people who are making a mark despite their disabilities and questioning the norms the society has imposed on them.)

If you could alter one part of yourself, would you? Most of us would say yes in a heartbeat.

Now, if you could genetically alter one aspect of yourself, and change something in your body’s makeup - would you still say yes?

This answer gets a little more complex.

This may be something people with disabilities (PWD), especially deaf people, may have to contend with soon. Recently, scientists said that CRISPR, a gene-editing technology, could be used to alter and potentially remove the deaf gene.

Many from the deaf community argued that this move was akin to ‘cultural genocide’ as this was a form of eugenics.

FIT spoke to Dr Alim Chandani, deaf activist and CEO of Access Mantra and Nipun Jain, disability rights and justice activist, to find out more.

Are We Destroying a Rich Culture?

The deaf community has a rich culture, with many languages - sign language has various cultural adaptions ( for example, Indo-Pak sign language is different from American sign language). And since much of the able-bodied world doesn't know sign languages, the deaf community exists in and apart from the able-bodied community.

Dr Chandani asserted that this would be especially damaging given the community’s thriving culture. “I believe the deaf community is the only disabled community that has a rich culture with a language, one that we have embraced significantly.”

“Is there a need to do gene editing to the deaf? It would destroy the rich culture of deaf.”
Dr Alim Chandani

Jain adds that this can be perceived as an “imposition on deaf culture and their communities”.

He tells me that this issue was raised during the cochlear debacle too when there was an advancement in the technology that reduced deafness. So tech as a way of “solving problems” is a very ableist perspective, the activists feel, especially when the problem we are talking about solving relates to someone’s identity.

Nipun adds that in India there is a lot happening around deafness and community, and in Delhi, there is a church where the sermons are given in sign language.

Dr Chandani urges me to flip the script and not think from an able-bodied perspective.

“I was wondering how about we think the opposite way - what if we give the opportunity to insert the deaf gene in everyone so that way they would be able to embrace the Deaf Culture including sign language - a way for them to understand that “we are not broken and do not need any fixing” for too many years - we have continued to accommodate to the “normal” society rather than keeping an open mind.”
Dr Chandani

Carving a space for yourself in a world that others you and creating a highly specific cultural identity takes work - so should the new tech potentially erase that?

Privilege and Disability: If You Could Afford an Easier Life, Would You Take it?

The world as it stands today is often unforgiving to difference and not all bodies are treated with equal respect. But far from existing in the margins, the deaf community has built an almost exclusive culture that belongs to them.

Any intersectionality of identity is impacted by socio-cultural norms, and so privilege plays a huge factor within disabled circles too.

‘I call it the three A’s: attitude, accessibility and affordability.”
Nipun Jain

“As a PWD myself, I do use technology to make my life easier. I can afford an automated wheelchair and so I definitely use it.”

But for deaf communities, this question gets fuzzier and fuzzier.

Would perhaps a poor deaf person want to embrace tech that removes their or their child’s deafness and lets them live life as an able-bodied person. Or perhaps as Nipun asks, “What about in the case of a couple expecting a child and don’t want it to have a harder life as a disabled person?”

Science Mag reported on 5 Russian deaf couples who opted for this tech to be used in IVF for their children.

Besides poverty, there are many reasons and contexts for which deaf people can choose to have their offspring be hearing.

No one except someone from the deaf community is equipped to answer this ethical hornets’ nest and Dr Chandani says, “The reason why those “less privileged deaf people” as you stated, may opt for technology is because of the lack of awareness of sign language. If they knew about it, they would be able to communicate with their children without any problem.

“I believe that we live in a comfort zone where the majority are hearing in our society and we continue to fail to see how we can adapt to meet the need of deaf children rather than spending so much time and money on “fixing them” when it is not needed. Learning sign language is basically free.”
Dr Chandani

It’s an ethically grey area, as one debates the possibility of erasing an entire culture.

“Gene-editing as a scientific pursuit is fascinating but also so grey in itself. Today it’s deafness, what if tomorrow it’s removing the LGBTQ+ gene or changing the skin colour of future generations?” asks Nipun.

The topic of gene-editing can often bring up worst-case scenario ideas and while tech is often demonized, it has helped improve our lives - able-bodied and PWD’s- immensely. It has helped empower us with independence and connectivity.

As things stand, could the option of the gene-editing technology being available be a sign of increased choice and autonomous decision-making for everyone? Or is it one step towards homogenising difference?

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