Woodcock, S. (2009, April). Disability, Diversity, and the Elimination of Human Kinds.
Social Theory and Practice, 35(2), 251-278.
Excerpt:
"In a discussion of medical technology and its impact on persons with disabilities, Connie Panzarino notes that she is frequently asked to provide a blood sample to help researchers identify the gene for a rare condition she was born with known as Werdnig-Hoffmann Disease. Recognizing that this information will be used to prevent persons who carry the gene from being born, Panzarino is mystified and angered by these requests. She offers an illuminating explanation for her refusal to cooperate with the research: "I cannot in all conscience contribute to the elimination of people like myself." Panzarino's reasons for opposing the elimination of disability were complex and varied, but one can extract from her statement a recognizable objection from many in the disabled community: the claim that there is something wrong with research and medical technology designed to prevent certain kinds of humans from existing. Members of the Deaf community have expressed the objection when arguing against the widespread use of cochlear implants, and persons with spina-bifida, achondroplasia, and other genetic conditions have similarly objected to me goal of preventing persons with disabilities from being born. Panzarino's claim is especially striking, however, because the condition she inherited is associated with very serious disabilities and what many consider to be a diminished quality of life. Werdnig- Hoffmann Disease is a type of Spinal Muscular Atrophy characterized by weakness of voluntary muscles, swallowing difficulties and impaired breathing. It has a mortality rate greater than sixty percent by age two, and mis mortality rate rises to nearly eighty percent by age five.4 It is a disease that, along with Huntington's Disease, Tay-Sachs, and LeschNyhan Syndrome, most people believe we have a straightforward moral obligation to eradicate. Panzarino, however, lived to the age of fifty-four. She was an accomplished therapist, artist, and author who lived a rich and productive life. Why, men, is it morally required, or even permissible, to try to prevent persons like her from existing?
In this paper I discuss a certain way of advancing the claim that it is morally wrong to seek the elimination of certain human kinds by preventing representative persons of these kinds from existing. I then argue that a qualified interpretation of this claim ought to be taken seriously. Some interpretations of the preceding claim are, of course, false. For example, the claim mat it is never permissible to eliminate any human kind is a nonstarter. The successful eradication of Huntington's Disease would presumably be a good thing, though research aimed at doing so would consist in seeking to prevent a particular human kind from existing. Hence, it is not necessarily pernicious to seek the elimination of at least some human kinds, though we begin to tread on delicate ethical territory when we explicitly adopt this as our objective when developing new medical technology."
Rachael A. Zubal-Ruggieri
Information Coordinator, Center on Human Policy, Law, and Disability Studies
Coordinator of Computer & Technical Applications, Early Childhood Direction Center
Editorial Staff, Intellectual and Developmental Disabilities (IDD)
Syracuse University
