00:00Andre and Leslie are a deaf couple who have recently decided to have a child and they're
00:10considering using a process called pre-implantation genetic diagnosis. In PGD, an embryo is screened
00:17for genetic conditions before being transferred into the uterus, allowing prospective parents
00:22to exclude embryos with unwanted genetic conditions. However, Andre and Leslie are considering
00:29using PGD to ensure deafness in their child. While the couple is uneasy exercising such
00:35profound control over their child's future, as deaf parents, they feel they could provide
00:40better guidance to a child that would share their lived experience and grow up immersed
00:45in deaf culture. But is it ethical for these two to select for deafness? The rise of genetic
00:52technologies like PGD have led philosophers to consider this kind of question. And to
00:58make sense of these dilemmas, many thinkers rely on the principle of procreative beneficence.
01:04Coined by philosopher Julian Savalescu, this principle says any prospective parent able
01:10to select their future child's traits should give their child the best chance at the best
01:15life. But defining the best life is incredibly tricky. After all, what exactly makes a life
01:23better? Or worse? For many hearing people, it's common to think that deafness must make
01:30a life worse, regardless of how good the rest of that life may be. This perception of disability,
01:37that people with a disability are worse off just for being disabled, is what philosopher
01:41Elizabeth Barnes calls the bad difference view. And many philosophers, deaf activists and
01:47deaf individuals argue that this view is false. Barnes herself favours the mere difference view,
01:54which says that being disabled is neither inherently good nor bad. It's merely different.
02:00For example, just as hearing people can have auditory experiences of music that deaf people can't,
02:07deaf people can experience music through vibrations in ways hearing people can't. The two are simply different
02:13experiences. And Barnes would say the difficulties faced by people with a disability most often don't
02:21come from these different experiences, but rather from the ways in which our society is not designed
02:28for people with disabilities. Andre and Leslie know their lived experience is different from a hearing
02:34couple's. In fact, it's a big part of why they believe they're better positioned to parent a deaf child.
02:40As lifelong members of the deaf community, they've cherished specific experiences and rituals unique
02:46to deaf culture. So not only do they want their child to be a part of that community,
02:51but they're also worried about how to support and guide a child that spends most of their time
02:56navigating culture they're largely removed from. Philosopher Robert Sparrow thinks it's very
03:02reasonable to believe that parents might be better suited to raise children in the culture that they
03:07themselves are a part of. And there's reason to believe that a child who grows up feeling
03:12understood by their parents and secure in their family unit would indeed have a better life.
03:18If this logic is sound, the principle of procreative beneficence seems to say that some deaf parents
03:25should try to have deaf children. However, following this principle's logic to the extreme raises serious
03:33issues. After all, disability is just one of the countless traits that can prevent a child from
03:38having the best chance at the best life. Our world is full of discrimination that makes life worse for
03:45people of certain genders, sexualities and races. But it's clearly wrong to prevent people in these
03:51groups from being born just because existing prejudices would make their lives worse. As bioethicist
03:57Adrienne Ash worries, this attitude suggests the harmful and disrespectful idea that the lives of
04:03people with a disability are less worth living. Surely the better approach is to get rid of the
04:09prejudice and the accessibility issues rather than the people who experience them. But intolerance can't
04:15be dismantled overnight and Andre and Lesley are wondering what to do now. So maybe they owe it to
04:21their future child to help them navigate the world as it is, selecting against deafness so their child
04:27won't experience that prejudice. Clearly, even with tools like PGD, it's incredibly difficult to ensure
04:34the best life for your child. But maybe genetic intervention is misguided in the first place.
04:39After all, if parenting is actually an exercise in acceptance rather than control, perhaps the best
04:46path for Andre and Lesley is to simply leave things to chance. Keep probing the depths of your ethical
04:53beliefs with this video and contemplate how we should determine the value of a life, whether human or non-human.
