Rebecca-Anne Withey: My view on genetic testing for deafness

The cause of my deafness has never been something that has bothered me. I have a sister who, like me, is deaf, but aside from her everyone in my family is hearing.

Growing up with my sister, neither of us dwelled on the reasons for our deafness, we just took it in our stride. I don’t even recall us having any memorable conversations about our hearing; we just plodded on, going to audiology, speech therapy trips together and taking it all as being part of our “normal” existence.

So when our parents took us to a centre in Nottingham for genetic counselling, this felt like just another mundane test that we had to do.

I remember the specialists looking at my hands, my hair, my eyes. And I remember feeling overwhelmed when I was asked if I wanted a cochlear implant and bursting into tears.

It turns out my parents were told it was down to a faulty gene that they both carried which produced deafness in myself and my sister.

No blood tests were taken, so no exact gene was named as the cause of this but I do remember being told “if you marry a hearing man, you’ll be more likely to have hearing children…”

Fast forward twenty something years and I am married to a deaf man and I have a son who is hearing and a daughter who is deaf. Both my husband and I knew that there would be a chance our children may be deaf, but this was never a huge concern to us. We are who we are and our children will be who they are born to be.

So earlier this week when I was asked by my daughters audiologist if they could have our permission to send her for genetic testing, my immediate response was “why?”

I was told that the test would (probably) tell us the exact cause for her deafness and also work out the chances of her passing deafness onto her children. She’s two years old and we’re thinking of her children already?! 

They then mentioned something about her hearing brother possibly being a carrier if the deafness is a genetic cause, and said how he could be tested in future too.

Now, I completely and utterly understand why parents may want to screen for health conditions / illnesses, but I do not feel that deafness is one of them. I am deaf, so my views on having a deaf child may be entirely different to a hearing parent who is faced with something completely new and unfamiliar.

But deafness is my familiar. And for all those involved in my immediate family, it’s our familiar too. So I do not see any real reason or benefit for finding out the medical reason for my daughters deafness. Her deafness will still remain unchanged. And whether she has deaf or hearing children, they will be accepted.

Browsing literature online, I noticed that I’m not alone in these feelings. The American Journal of Human Genetics surveyed parental attitudes towards genetic testing for paediatric deafness and stated,

“Deaf adults had a predominately negative attitude towards genetic testing for deafness, with the majority stating that such tests would do more harm than good.”

It reasoned that as the majority of deaf children were born to hearing parents, it was understandable that these parents were searching for a reason for this unexpected event. Just like my parents were.

That is not to say that deaf parents don’t participate in genetic testing (they do!) but more often than not the reasons for doing so stem more from curiosity than anything else.

One of my concerns about genetic testing was how the results would be received by hearing parents.  Some of the parents surveyed stated that the results of the genetic testing would impact their decision to have further children, with adoption being an option rather than

 “risk having a child who is deaf.”

This concern was echoed in the article by reports from the deaf community expressing their fear that an increase in genetic testing would lead to a decrease in the number of  congenitally deaf children.

Action on Hearing Loss actually completed a genetics testing project in 2012 with the results being published in the American Journal of Medical Genetics. They stated that;

“The project will help to determine the deafness genes that are the most common cause of deafness in Europeans. This knowledge is currently lacking and will also aid the development of treatments in future.”

A new idea I also came across was how most (62%) of the parents surveyed wanted prenatal screening for deafness to be offered. This would (apparently) enable an expectant parent to be better prepared by learning sign language or researching hearing loss.

But wouldn’t a prenatal screening also carry a risk of affected pregnancies being terminated?

It’s a deep and complicated topic and the concept of eugenics, of manipulating a “perfect” human race is one that makes me feel highly uncomfortable.

As a culturally Deaf person, I don’t wish to make my daughter or any deaf child feel that they have less of a right to be here than a hearing child. I believe very strongly in the social model of deafness as opposed to the medical model which tells me I’m broken and need fixing.

Even the NHS website states that it offers genetic counselling to couples where both individuals have a “hearing impairment.” This is in order to determine whether they will have a “hearing impaired child.” Are we going back to the time where deaf people were discouraged to marry for fear of continuing a deaf race?

I suppose I hadn’t realised how deeply ingrained my Deaf identity was until I came across this subject. And it’s clear that there are mixed views about the testing being carried out.

But this is my view. And I do not want my daughter being poked and prodded at the age of 2 for a cause that I’m not sure I even approve of.

Genetic testing for deafness; who is for the benefit of?

You can read the quoted article here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1287942/

By Rebecca-Anne Withey. Read more of Rebecca’s articles for us here.

Rebecca-Anne Withey is a freelance writer with a background in Performing Arts & Holistic health. 

She is also profoundly deaf, a sign language user and pretty great lipreader. 

Her holistic practices and qualifications include Mindfulness, Professional Relaxation Therapy, Crystal Therapy and Reiki. 

She writes on varied topics close to her heart in the hope that they may serve to inspire others.