Academic journal article The Hastings Center Report

Policing the Borderlands of Normal

Academic journal article The Hastings Center Report

Policing the Borderlands of Normal

Article excerpt

Every few years, the attempt to surgically separate conjoined twins becomes a national, even international, media event. Underlying the fanfare is our voyeuristic curiosity about atypical bodies, a curiosity satisfied when the press and the hospitals where the surgery occurs publicize the lives and anatomies of the conjoined twins in extraordinary detail. Aside from supplying photos and life histories of the twins, a roster of the medical team (sometimes as large as fifty), the head surgeon's biography, and the hospital's history of performing these surgeries, news reports also provide anatomical portraits of the twins' interior anatomy (by way of MRI and CAT scans) and animated 3-D movies of the surgical procedure that will enable its dismantling. While the degree and site of conjoinment varies, media reports paint all forms of conjoinment as a "tragedy" and hail the wondrous new technology that will give the twins a normal life otherwise unavailable to them. By almost all accounts, surgery is an unequivocal good.

In her illuminating and highly readable new book, One of Us: Conjoined Twins and the Future of Normal, historian of medicine Alice Dreger looks beyond altruistic explanations for surgical separation to ask some important questions: How "successful" are these surgeries? How do conjoined twins feel about their conjoinment? Why are separation surgeries performed and why do they seem so necessary? Dreger's concern is less with what we can do and more with what we should do. Given the recent deaths of Laleh and Ladan Bi jani--the first conjoined twins in history to consent to surgical separation, who died during surgery at age twentynine--Dreger's reconsideration is important and timely.

Beginning in the 1950s, biomedicine assumed authority over conjoinment. As a consequence, Dreger tells us, for the last half-century clinicians have attempted surgical separation on almost all conjoined twins. The vast majority of these surgeries have been performed on infants or children; the Bijani twins were a notable exception. Given the consistency in approach, it may be surprising to learn that separation surgeries have been marked by high fatality rates and frequent physical impairment. The few outcome studies that do exist, Dreger writes, have failed to address the psychosocial status of the twins, which is, after all, the reason given for most separations.

It would be a mistake to view the dearth of data about the efficacy of separation procedures as a problem unique to surgery on conjoined twins. Dreger correctly locates this phenomenon more broadly in the lack of regulatory oversight of technical innovation, especially in surgery. Historically, surgical innovation and research have not been held to the same scientific, regulatory, and ethical standards as other medical research. Unlike drugs, most surgical procedures do not require approval from IRBs and are not subject to systematic review or follow-up. The follow-up studies that do exist are often carried out by surgeons--making reporting bias a concern--and often do not incorporate the views of the surgical patients themselves. Most studies also follow too few patients for too short a time; consequently, we have little knowledge of the side effects, the long-term complications, or the relative success of most surgical procedures.

Early in the book, Dreger challenges the notion that conjoined twins suffer excessively as a result of their conjoinment. Grounding her analysis in the historical autobiographies and biographies of conjoined twins, Dreger reveals that the majority did not feel trapped or view their conjoinment as an impairment; they adapted to their unique embodiment and lived relatively normal lives. Based on these findings, Dreger argues that most conjoined twins would not necessarily choose surgery, and by separating them before they are old enough to consent, or even assent, we may actually be doing them a disservice. …

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