Selecting Genes in Offspring
Individual Disease Deformity or Community Identity Marker?
Some members of the deaf and dwarf communities want to pass on these characteristics to their offspring. This development is compared to other forms of community identity
In yesterday’s New York Times, there was a provocative essay by Dr. Darshak M. Sanghavi, a pediatric cardiologist at the University of Massachusetts Medical School, in which the doctor describes how some parents intentionally choose to have offspring with defective genes so that their children will not be “different” from their parents. In particular, parents who themselves are deaf or are dwarves may elect to pass on these characteristics to their children because these parents, as the article puts it, “don’t view certain genetic conditions as disabilities but as a way to enter into a rich, shared culture.”
What this article vividly illustrates is how cultural communities sometimes contest the imposition of the label “disease” on a particular human characteristic in an attempt to remove the negative connotations that such an act of labeling sometimes entails; as the preeminent historian of medicine Charles E. Rosenberg has emphasized, these groups are attempting to frame disease in ways that serve their particular cultural ends.
This general issue of whether a particular human attribute should be treated as an individual “disease deformity” (which contemporary biomedical technology might be able to “cure”), or a cultural community identity marker was analyzed by Clarence Page in his essay on the News Hour with Jim Lehrer on “Breaking out of Boxes.” As Page points out, there are some boxes that we are born into—for example, gender, race, and nationality. However, there are other “boxes,” which, with developments in technology, we have the choice of leaving. Page uses the example of the cochlear implant as a technology that opens up the possibility for the deaf to hear and how some, in the deaf community, have resisted this technological development as “cultural genocide.”
At one level, this debate could be seen as a contemporary example of an ever-present phenomenon—that people, in all times and places, have sought to preserve a sense of cultural identity. However, in another respect, the political assertiveness of some members of the deaf and dwarf communities also reflects broader social and political developments that have occurred in Western society during the second half of the 20th century and the 1st decade of the 21st century.
While it is certainly true, as Page argues, that everyone is born into certain “boxes,” the history of political activism during this period could be seen largely as an attempt to redefine (and give positive connotations to) the cultural meaning of being part of particular boxes (e.g., based on gender, race, etc.) in an attempt to combat such things as gender inequality and racial discrimination. Similarly, by questioning the necessity and/or appropriateness of certain medical procedures, these members of the deaf and dwarf communities mirror the actions of other groups who have questioned what they regarded as unjustified medical paternalism—such as the early sufferers from AIDS who became politically active on the issue of the design of clinical trials.
To see how far things have come over the course of a century, it is useful to contrast the contemporary actions of some members of the deaf and dwarf communities with supporters of eugenics in the second half of the 19th and the 1st half of the 20th century. Eugenics means “good in birth” and the term was associated with the belief, espoused in many countries, that only the “fittest” members of society should breed and reproduce.
To ensure eugenic outcomes, many countries passed sterilization laws during the 1930s. In North America, sterilization was legalized in the Canadian province of British Columbia in 1933 and the requirement of voluntary consent was removed from the sterilization law in Alberta in 1937; in the United States, the upholding of a Virginia sterilization law in 1927 by the Supreme Court (Justice Oliver Wendell Holmes wrote “three generations of imbeciles is enough”) soon led 12 states either to enact new sterilization laws, or modify existing statues.
The contrast between these movements could not be more striking. Although both movements attempted to move (to borrow an apt book title) from chance to choice in making reproductive decisions about future generations, the eugenicists generally believed that
- What should be done (by the state) and
- To whom it should be done (the imbeciles)
could be fairly clearly determined.
As the article by Sanghaviindicates, by contrast, both of these claims have been contested by some contemporary members of the deaf and dwarf communities.
