Birthing: Amniocentesis and Hard Decisions

Background: This video, extracted from YouTube, originally aired on Showtime's "This American Life" on Season 2 Episode 1. Chicago Public Radio sponsors this highly acclaimed weekly radio broadcast that gained enough popularity to prompt its adaptation to television. Anthropological in many ways, “This American Life” identifies both obscure and ordinary phenomenon in American culture and compiles social ethnographies through interviews, images, and music that almost invariably challenge stereotypes. 

The episode “Escape” features Mike Phillips, a 27-year-old young man with a genetic disorder called spinal muscular atrophy. In effect, he cannot move his limbs. The only movements his muscles allow includes a weak tapping of his thumb that transmits letters, and eventually words, onto a screen as well as the blinking of his eyes in response to questions. Ira Glass, the host of TAL, describes Mike’s life as “tenuous”, hanging by a thread. Each meal represents a struggle with feeding tubes and every time he attempts mobilization- to the car or just to go outside- he risks death.

Mike’s steadfast mother, Karen, never mentions an experience with amniocentesis or a conscious decision to conceive a child prenatally diagnosed with such a rare and severe genetic disorder. However, in our readings this week, we explored amniocentesis as it related to women interested in determining prenatally whether or not their children had genetic abnormalities. Rayna Rapp in “Accounting for Amniocentesis” seeks to portray the multiple meanings of amniocentesis through the lenses of both women and other figures, each with their own association to the scientific process. 

The genetic technicians Rapp follows in the New York lab view amniocentesis as research, a means to uncover obscure genetic conditions, as well as a scientific process that for the time being pays their bills. Amniocentesis reduced to a perfunctory task, a lab tech likens a fetus to a wimp by stating, “It’s got a wimpy Y and the bikini on the X is pretty gross”, underscoring the detached emotions of the technician. Like many other things in life that vary in value depending on the beholder, the results of a “needle test” had huge implications to the pregnant clients but amounted to a toilsome task for the lab techs. 

Rapp remarks on the differing perspectives of mother vs. provider on a prenatally diagnosed, disabled baby. She asserts, “As the geneticists pathologized the mother ‘genealogized’”, a significant statement in that it summarizes the distinction between the two parties. The geneticists observed the child with the keenness of scientists gazing upon a study subject. While they hastily scribbled down notes on the baby’s condition, the mother fondly noted her child’s likenesses to family members. 

Two women from Rapp’s account closely align with Karen’s representation in Mike’s story: Veronique, who conceived a baby prenatally diagnosed with Trisomy 9, and Pat, who conceived a baby prenatally diagnosed with Downs syndrome. Their unwavering decisions to raise disabled children in spite of medical suggestions sparks questions. Why did the somber predictions made by the genetic technicians fail to deter Veronique and Pat from conceiving their children? And how is Karen able to so selflessly tend to her severely disabled son, both day and night without help? 

Veronique and Pat each created human beings who share their genes, even if that means unlucky ones that carried traits for abnormalities. Modern technology offered them a chance to throw back their creations, imperfect to the scientific eye, but they clung to them instead. Rapp uses metaphor for the uncharted amniocentesis process by dubbing it “the DNA research frontier”, “information for consumers without guideposts”, and “a play whose acts are as yet unwritten.” As an anthropologist, she halts judgment for the mothers’ choices and the geneticists’ attitudes, and continues to evaluate amniocentesis. 

Mike Phillips surely suffers from a condition unimaginable to most in its scope of pain and physical restrictions. However, he fights with vigor against his limitations and remains in solidarity with Karen, his mother who fights alongside him to increase his odds of surviving, each day at a time. Fortunately, Mike’s access to health care resources and Karen’s ability to serve as his full-time nurse allow him to exercise occasional autonomy, which helps his quality of life. 

In contrast to Mike’s relative privilege, at least socioeconomically, Rapp introduces amniocentesis as a public health measure in New York City used to curb seemingly extraneous funding for the disabled poor populations. Through the lenses of politicians, the costly “needle test” pales in financial comparison to the money necessary for social services to support disabled people in poverty. Similar to the geneticists’ emotionally removed interest in the findings from amniocentesis, the Health Department betrayed the population by blurring the lines between “eugenic and choice-enhancing aspects of prenatal diagnosis.” 

The complex array of perspective serves as essential tools in evaluating amniocentesis anthropologically. Rapp meets this task by introducing varying viewpoints and examining them critically but comprehensively. I highlighted Mike Phillips’ story because it provides duality to the conflict of determining the worth of allowing or refusing disabled lives before birth. On the extreme end of disabled, his obvious struggles require constant attention and interfere with his quality of life... In contrast, his attempts to actively study the human condition and to function in society mirror those of almost everyone I know.