Selecting for Deafness
Andre and Leslie want to have a child. They decide to use a process called preimplantation genetic diagnosis (PGD). In a 2006 story, the New York Times explained PGD as a process whereby “embryos are created in a test tube and their DNA is analyzed before being transferred to a woman’s uterus. In this manner, embryos destined to have, for example, cystic fibrosis or Huntington’s disease can be excluded, and only healthy embryos implanted” [1]. Andre and Leslie, however, wish to use PGD to select for a disability: Andre and Leslie are deaf and want to have a child who will grow up immersed in Deaf culture, who understands the experience of Deafness, and who communicates via sign language.
Some of their friends strongly object to their plan but find it hard to articulate exactly what is so wrong about selecting for deafness. Others argue that Andre and Leslie are compromising their child’s future by trying to engineer their deafness and that knowingly and willingly bringing someone into the world under these conditions is wrong. But Andre and Leslie respond that no child is born with an uncompromised future, and yet very few people think that having children is wrong in general.
Many children are born into families whose circumstances are not considered optimal and in which opportunities may be limited, yet few would claim that these parents acted immorally by having children.
In fact, Andre and Leslie argue that their child would have a better life if born deaf because they would be in a better position to parent this child, and because the family would experience the world in similar ways. Andre and Leslie also explain that they are not harming anyone by creating a deaf child. After all, since they are choosing which of multiple frozen embryos to bring to term, a different person will come into existence depending on which choice they make. How could they harming their deaf child when the alternative is that embryo remains frozen and that child is never born at all?
DISCUSSION QUESTIONS
Can we harm or benefit a child by bringing them into existence? Why or why not?
If a parent has the power to decide which of two people will come into existence, and if they know that one of these people will have a better life than the other, do they have a moral obligation to choose the person who will have a better life? Why or why not?
What is the relationship between disability and wellbeing? All else equal, is it better to be born without a disability than with one? Why or why not?
In the case presented, the parents are choosing to bring to term an embryo with naturally occurring deafness. Compare the ethics of this scenario with the ethics of a scenario where parents seek to render an embryo with the potential to develop normal hearing deaf.
References
[1] The New York Times, “Wanting Babies Like Themselves, Some Parents Choose Genetic Defects”
