When applying to my high school, we had a group discussion on the ethics of cochlear implants. The main questions posed to us were should we require deaf babies to be implanted with cochlear implants, because it is easier to adjust to the technology the younger one is, should parents be able to choose whether their child gets an implant or should you wait until a child is old enough to decide for themselves that they want the cochlear implant. Even though I had been interested in medicine my whole life, I had never thought of ethical medical dilemmas like this until that moment. During this discussion, we focused on the impact different socioeconomic statuses might have in making parents decide whether to get the implant or not, the reactions of the Deaf community who felt like this was erasing their culture and could possibly be considered a genocide, and how to navigate the ethics of a child’s autonomy. This experience also made me think a lot about how we perceive disabilities as researchers viewed deafness as a problem to be fixed instead of working to make our world more accessible to those who are deaf.
When reading through the Scientific American, I found an article called “Out of Silence”, which explores the new progress in using gene therapy to “treat” deafness. Their process involved identifying which mutations negatively affect the ear’s hair cells, breeding mice to develop these mutations, and now using a virus to carry genes that will strengthen the protein’s in inner and outer ear hair cells.
After reading this article and recalling the discussion on cochlear implants, it made me wonder whether this technology needed to be made. Though I don’t always agree with Wendell Berry, when reviewing how these technologies do with the 9 standards, I thought about how they might not pass his test. Both technologies would be disrupting something good as it would decrease the Deaf population and for those who have cochlear implants there is sometimes an identity crisis as they are neither deaf nor hearing. It made me think of how much funding and resources goes to “treating” disabilities like deafness and the impact this could have on engineering research.
One study found that less than 20% of medical schools teach students how to talk to people with disabilities and this results in people with disabilities receiving subpar health care compared to their able-bodied counterparts. This made me wonder how well engineers would say they do in making sure their inventions are accessible to everyone and how our engineering curriculum can be adapted to better serve everyone. For example, how many civil engineers are trained to put walking signs that will make noises that will notify blind pedestrians that they can safely cross or how many biomedical engineers who work in bioinformatics will make sure their digital video content has comments to ensure their deaf audience is able to participate. Many engineering majors at NC State are not required to take ethics courses and thus less likely to think about how their research could impact inequality. This is particularly relevant as we do a lot of research in cochlear implants and aren’t preparing these students to think about the ramifications of designing products that might unintentionally contribute to a cultural genocide. This reading helped me remember that a lot more needs to be done to ensure that engineering is a tool to make this world more accessible to all regardless of disabilities and that there needs to be an increase in STEM resources and opportunities for students with disabilities.
Sources:
https://www.scientificamerican.com/article/gene-therapy-tackles-a-common-birth-defect-deafness/