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Social Worker's Approach To Deaf Gene Editing

Hazel's picture

Since I will not be present in class tonight, I decided to post my thoughts on how a social worker would contribute in selecting for or against a deaf child using gene editing. This position that I picked on Monday interested me because I am starting social work school next year and wanted to reflect on ethical issues in such situations. 

As a social worker, I would help parents/family assess resources, circumstances and prospects of the family, environment in which a child will live, and all available options they can choose from moving forward. Though it upsets me to even write this, in some instances it would be better for the family to select for a hearing child, for instance, if their financial and geographical situations do not allow for the child do go to the school where they can thrive, or for family to learn ASL. Government assistance is almost never enough, and the family might not have the resources (i.e. money, transportation, time, education, support, access to deaf spaces and community) to help a deaf child to live a fulfilling life in the hearing world. [I really want to be wrong about this, so please comment if you have counterarguments to this paragraph!]

Then, regardless of the family’s preliminary decision, I would validate their experience and choice and educate them on all resources that are available for them in the community, institutions and nation-wide. Sometimes, parents might not realize that there are many support points in their area which would allow their deaf child to thrive. No matter what the family ends up choosing (they would always be the ones making the final decision), I would connect them to appropriate resources to prepare for having a hearing or deaf child, counseling services, healthcare providers, community care centers, schools and/or deaf spaces.

All in all, I really hope I would have to advise against a deaf child extremely rarely, if not never. Building strong community care and working towards universal access through education and advocacy would allow us to never have to make a decision like that again, and I hope that as a social worker, I will be able to bring some positive change in these areas. 

As a final thought, I want to acknowledge that I disagree with my own post in a way. Many questions popped up for me as I was writing it: Where would the threshold for making a decision to select against a deaf child be? How to deal with the unethical part of making such decision? How do we mediate social inequality that would lead to having a deaf child becoming a privilege, since that decision is based on one’s resources? Finally, isn’t assuming a deaf child should ‘thrive’ a form of inspirational porn?

Please let me know your thoughts, I would really love to discuss this!


cds13's picture

Hi Hazel, I really enjoy reading your post about being a social worker. I found it interesting that you disagree with your own post in a way. It means that you are thinking critically about the issue and approaching deaf gene editing through different lenses which are necessary. I think you raise some very important and challenging questions. I wish I had an answer to one of your questions but I do not. Although, I am curious to know what other students think. 

Bella's picture

Hi Hazel! 

I think you make some really interesting points in this post and I agree that ideally, parents would never need to select for a hearing child, but that in some cases it might be better for all involved to do so. I think in many cases, the decision of whether to give a child a cochlear implant or not (what people imagine as a way of selecting for a hearing child after the child has been born deaf) comes down to what will be the most convenient for the parents. More than 90% of deaf children in the US are born to hearing parents, and the vast majority of those parents have never been exposed to sign languages or the Deaf community. Therefore, many hearing parents are taken aback when they learn that their child has been born deaf, as it's not what they expected and they see it as a problem to be fixed rather than a part of their child's identity. It's often passed off as a decision that will be best for the child, but I do think it's more for the parents, who don't want to learn ASL and want their child to be "like them". I think that the debate ends up being "what will be best for the child / the family", when people should be thinking about why it is that life is expected to be automatically easier for a hearing child than a deaf child. Why there are so few government resources available for hearing families of deaf children. Why there are so few Deaf schools and why they are only in certain parts of the country. I like that you touched on some of this in your post, and I like your bit at the end about the image of thriving Deaf children is potentially a form of inspiration porn. I hadn't thought about that but I think you're right.

Thanks for sharing! :)