Andre and Leslie are a deaf couple who have recently decided to have a child, and they’re considering using a process called preimplantation genetic diagnosis. In PGD, an embryo is screened for genetic conditions before being transferred into the uterus, allowing prospective parents to exclude embryos with unwanted genetic conditions. However, Andre and Leslie are considering using PGD to ensure deafness in their child.
While the couple is uneasy exercising such profound control over their child’s future, as deaf parents, they feel they could provide better guidance to a child that would share their lived experience and grow up immersed in deaf culture. But is it ethical for these two to select for deafness? The rise of genetic technologies like PGD have led philosophers to consider this kind of question.
And to make sense of these dilemmas, many thinkers rely on the “Principle of Procreative Beneficence. ” Coined by philosopher Julian Savulescu, this principle says any prospective parent able to select their future child’s traits, should give their child the best chance at the best life. But defining the best life is incredibly tricky.
After all, what exactly makes a life better or worse? For many hearing people, it’s common to think that deafness must make a life worse— regardless of how good the rest of that life may be. This perception of disability— that people with a disability are worse off just for being disabled— is what philosopher Elizabeth Barnes calls the “bad difference view.
” And many philosophers, deaf activists, and deaf individuals argue that this view is false. Barnes herself favors the “mere-difference view,” which says that being disabled is neither inherently good nor bad— it's merely different. For example, just as hearing people can have auditory experiences of music that deaf people can’t, deaf people can experience music through vibrations in ways hearing people can't.
The two are simply different experiences. And Barnes would say the difficulties faced by people with a disability most often don’t come from these different experiences, but rather, from the ways in which our society is not designed for people with disabilities. Andre and Leslie know their lived experience is different from a hearing couple’s— in fact, it’s a big part of why they believe they’re better positioned to parent a deaf child.
As lifelong members of the deaf community, they’ve cherished specific experiences and rituals unique to deaf culture. So not only do they want their child to be a part of that community, but they’re also worried about how to support and guide a child that spends most of their time navigating culture they’re largely removed from. Philosopher Robert Sparrow thinks it's very reasonable to believe that parents might be better suited to raise children in the culture that they themselves are a part of.
And there's reason to believe that a child who grows up feeling understood by their parents and secure in their family unit would indeed have a better life. If this logic is sound, the Principle of Procreative Beneficence seems to say that some deaf parents should try to have deaf children. However, following this principle’s logic to the extreme raises serious issues.
After all, disability is just one of the countless traits that can prevent a child from having the best chance at the best life. Our world is full of discrimination that makes life worse for people of certain genders, sexualities, and races. But it’s clearly wrong to prevent people in these groups from being born just because existing prejudices would make their lives worse.
As bioethicist Adrienne Asch worries, this attitude suggests the harmful and disrespectful idea that the lives of people with a disability are less worth living. Surely, the better approach is to get rid of the prejudice and the accessibility issues, rather than the people who experience them. But intolerance can’t be dismantled overnight, and Andre and Leslie are wondering what to do now.
So maybe they owe it to their future child to help them navigate the world as it is— selecting against deafness, so their child won’t experience that prejudice. Clearly, even with tools like PGD, it's incredibly difficult to ensure the best life for your child. But maybe genetic intervention is misguided in the first place?
After all, if parenting is actually an exercise in acceptance rather than control, perhaps the best path for Andre and Leslie is to simply leave things to chance.
