- Risky Business
On The Web
By Alice Dreger and Ellen K. Feder
The authors of a 2007 Journal of Urology paper report why they believe a group of girls are still able to have sexual sensation after removal of parts of their clitorises: annual exams following surgery that involve a doctor stimulating their clitorises with vibrators while the girls, aged six and older, are conscious, and a parent watches. We didn’t believe it, either, till we read it.
Behind the Curtain of Personalized Medicine: The Havasupai Tribe Settlement
By Susan Gilbert
For personalized medicine to realize its potential, genetic tests must be accurate and enable prevention or treatment. Reaching these goals requires more basic genetic research on human biospecimens – blood, saliva, and leftover surgical and biopsy tissue. But there is a lack of this material for genetic research, and getting it thus far has been ethically and legally problematic.
Spin Doctors and Torture Doctors: Inconvenient Truths about Complex Systems
By Nancy Berlinger
The allegations in these reports reveal a looking-glass-land version of a legitimate health care system, in which goals such as safety and effectiveness were applied to illegitimate activities, as if torture could be considered safe as long as those being tortured did not die, and as if effective torture methods fell within the scope of quality improvement.
Also: Michael Gusmano tries to make sense of two conflicting reports on the financial impact of health care reform; Karla F.C. Holloway advocates for a valued life instead of “a grievable death”; Erik Parens is skeptical about the Presidential Bioethics Commission’s attempt to avoid the “big” questions; and Suzanne Schultz shows how researchers get around the laws that prohibit paying donors for eggs.
- To the Editor
In their very fine “Risk and the Pregnant Body” (Nov–Dec 2009), Annie Lyerly and her colleagues write persuasively about the opposite ways in which health care professionals go wrong where pregnant women are concerned. Women’s nonobstetrical medical needs, they report, are undertreated because the risks of intervention loom so large in professionals’ thinking that they drive out considerations of the risks of not intervening. Conversely, though, laboring women are overtreated, because here the risks of not intervening drive out considerations of the risks of intervention.
Nor are health care professionals the only ones whose thinking is distorted in this way. Pregnancy advice books, Internet sites, friends, neighbors, and total strangers are only too eager to tell pregnant women what they must and must not do to preserve their fetus’s health and well-being, regardless of the evidence of actual risk.
Lyerly et al. explain this sort of thing as a kind of magical thinking—“a way to try to tolerate an unsettling truth: that try as we might, what we love may perish.” In many cases, that analysis is likely correct: if only I can eliminate all risk, I can keep my much-loved child-to-be from harm.
Yet the socially shared master narratives that guide our sense of what is supposed to happen during pregnancy (purity) and delivery (control) are deeply entangled in the master narratives about mothers and, more broadly, about women’s place in society. These wider stories work on us at a visceral level beyond the reach of reason. This means that the roots of magical thinking often aren’t so much about what we love as about whom some of us can police.
On January 21, not a month after “Risk and the Pregnant Body” was published, the New York Times reported the case of a woman in Florida (why is it always Florida?) whose doctor recommended bed rest because she was at risk for a miscarriage. When the woman protested that she had two toddlers to care for and a job, the doctor alerted the state, and a circuit court judge ordered her to bed. I doubt either the judge or the doctor was motivated by love—certainly not love of the woman or her existing children. Instead, both seemed to think she was a bad mother because she would not sacrifice herself...