In our post Human Genome Project world all eyes lie on the gene, as geneticists and society as a whole constantly aim to define what constitutes natural, normal and socially acceptable.
Flexible Eugenics is described as a process involving “technologies of self through choosing and improving one’s biological assets” (Heath and Taussig). Alternatively stated, flexible eugenics offers voluntary improvement of one’s physical make-up through the purchase of surgical modification. A unique example of this is presented in the case of a young American woman who gained twelve inches in height after undergoing multiple surgeries for the controversial procedure of “limb lengthening” (Heath and Taussig). Interestingly, the results were presented at a conference before an audience composed mainly of at least five hundred successful adults of small stature and members of the Little People of America (LPA).
Achondroplasia is noted as “the most common form of heritable dwarfism” (Heath and Taussig). The LPA which was established in 1957 represents a very unique organization in that it was one of the first to form in the United States “based on a phenotypical difference” (Heath and Taussig). LPA has been particularly kind to medical researchers, particularly geneticists. Members have an extensive history of providing blood and tissue samples. One orthopedic surgeon’s response to limb lengthening is that “[he] could never stretch [limbs] for social acceptance [and that] it’s more abhorrent to [him] than prenatal diagnosis” (Heath and Taussig). This statement brings to the surface the classical eugenics ideas concerning the social unacceptability of dwarfism underlying flexible eugenics that concern many members of the LPA. In the novel Mendel’s Dwarf, Simon Mawer’s protagonist Dr. Benedict Lambert brilliantly illustrates the enduring social stigma represented by dwarfism: “You notice everything, that’s the trouble: every wince, every grimace, every dilation of every pupil…you hear them talking when you are out of earshot; you know what they are thinking” (Mawer, 67). This is also reflected in the ‘Endangered Species’ T-shirt worn by certain LPA members at conferences. Dr. Francamano a respected member of the LPA Medical Advisory Board “[worries] about what we’re doing [in terms of flexible eugenics] and how it’s going to be used and what it means to the people here” (Heath and Taussig).
Prenatal diagnosis, when not utilized in a classical eugenics fashion to prevent dwarf births outright, offers LP couples the opportunity to screen for the fatal double dominance condition in which an infant inherits both copies of the gene for a form of heritable dwarfism. The fears and concerns of LP individuals over the potential for widespread misuse of prenatal diagnosis by those of normal stature is reflected in the comment of a young woman who states “I just saw the most disgusting thing: two dwarfs, a couple, with a baby carriage and a baby dwarf. Why would people like that want to reproduce?” (Heath and Taussig). In nearly the same exact fashion, at a climax of a dinner scene in Mendel’s Dwarf, Hugo Miller vehemently asks Ben Lambert if “people like you [should] be allowed to breed?” (Mawer, 105). Another consideration is the role of consumerism in flexible eugenics where biological modification is achieved and accessible through purchase. Ben Lambert eludes to this when he states that flexible eugenics is “governed only be the laws of the marketplace…it will be eugenics by consumer choice, the eugenics of the marketplace” (Mawer, 273). Do the benefits of flexible eugenics outweigh the risks? How do we strike a healthy balance of improvement and preservation of unique qualities? Where do you stand?
“Flexible Eugenics: Technologies of the Self in the Age of Genetics”. In Alan Goodman, Deborah Heath and Susan Lindee, eds. Genetic Nature/ Culture: Anthropology and Science Beyond the Two Culture Divide (with Deborah Heath and Karen Sue Taussig), University of California Press, 58-76
Mawer, S. (1998). Mendel’s dwarf. New York: Harmony Books.
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