Deaf Culture and Parenting

"Wanting Babies Like Themselves, Some Parents Choose Genetic Defects"
Author: Darshak M. Sanghavi, MD
Publication: New York Times
Date: December 5, 2006

This essay in the New York Times provides an additional piece of information to the ongoing ethics debate surrounding cochlear implants. Examined in detail in previous posts, one of the strongest forces of opposition against cochlear implants is the advocates for the deaf community who fear the disappearance of a deaf culture upon the advent of advancing technologies. Within the deaf community, some deaf parents believe that having a deaf child would create a bond that would allow parents and children to share in an intimate culture. This article offers the lay public a glimpse of deaf parents who are willing to choose genetic defects for their children in order to create a tighter relationship through deaf culture. These parents have a goal that is the antithesis to cochlear implants: instead of enabling hearing for the deaf, they choose deafness over hearing.

P.G.D, or preimplantation genetic diagnosis, is an expensive and invasive process in which embryos with genetic diseases such as cystic fibrosis or Huntington’s disease can be identified and eliminated, leaving only healthy embryos for implantation. Not everyone uses the procedure to eliminate diseases, however. A John Hopkins University study surveyed 190 American P.G.D clinics and found 3% of cases had intentionally used P.G.D. to select an embryo for the presence of a disability, including deafness and dwarfism.

At first glance, the fact that some parents purposefully choose disabilities for their children is alarming. It is easy to label the act as unethical and selfish. The online magazine Slate called it “the deliberate crippling of children.” After consideration of the parents’ reasoning, however, the ethics of the situation are not so well-defined.

Commentary on this article broaches a discussion about the definition of disability. While those who can hear would define deafness as a disability due to the lack of an ability to hear, members of the deaf community would argue that a deaf person is just as proficient at communicating with developed skills in sign language and lip-reading.Many doctors who administer P.G.D., however, do not accept requests to select for disabilities. In an interview, Dr. Robert J. Stillman of the Shady Grove Fertility Center in Rockville, Md., said “In general, one of the prime dictates of parenting is to make a better world for our children. Dwarfism and deafness are not the norm.” Thus, contrary to the ardent advocates of deaf culture, medicine has resolutely defined deafness as a disability.