A carefully reasoned and disturbing portrait of potential hazards of excessive regulation.
Medical research is being stymied by the institutions charged with ensuring its safety, according to this exposé.
Whitney, a Baylor College of Medicine physician and bioethicist, pens a stinging critique of institutional review boards—the panels of scientists at universities and hospitals charged with vetting research proposals to ensure that human subjects are protected. They were created in 1974 to protect people from grossly abusive experiments, such as the infamous, decadeslong Tuskegee Study that withheld lifesaving treatment, resulting in more than 100 deaths. However, in the present day, Whitney argues, these boards have become so bureaucratic and risk-averse that they’re impeding important research projects. One board, he notes, demanded that a doctor submit an extensive bibliography on safety issues for a study that had no participants at all, as it consisted of analyzing proteins in leftover urine samples from a kidney-stone clinic. Equally absurd, he asserts, are extensive consent forms, full of dense legalese, which participants must understand before signing. In one study of the benefits of commonly prescribed anti-clotting drugs for cardiac patients, he says, subjects were asked to read and sign four-page consent forms while experiencing the early stages of heart attacks. Whitney ties such dysfunctional elements to the federal Office of Human Research Protections, whose dictates, he says, drive the excesses of such boards. In one incident that he spotlights, the office tried to stop a study aimed at preventing infections when implanting center-line tubes because the doctors and nurses involved didn’t also sign consent forms along with their research subjects. The upshot of all of this, Whitney asserts, is that crucial studies are being delayed or abandoned at a high cost for patients whose lives might be saved by faster research.
Whitney, who served on a Stanford University institutional review board in the 1990s, brings a canny insider’s perspective to a convoluted issue. He deftly analyzes the ethics that underpin board dysfunctions, noting that they fixate on trivial risks without balancing them against the needs of patients who need lifesaving treatments—or granting subjects the moral autonomy to take measured risks for greater humanitarian ends. Also, he’s shrewdly critical of the sorts of regulatory box-checking that affects every step of the review process. These problems can be hard to see in the obscure nuances of complex scientific studies, and Whitney does an admirable job of teasing them out and clarifying them for an audience of laypeople. He conveys all of this in a prose style that’s lucid, down-to-earth, and tartly entertaining: “I am sure that, acting alone, no single member could reach this level of crazy. It took a village,” he writes of a board that saw a potential threat of AIDS or smallpox in a study that involved swabbing the skin of healthy volunteers and rubbing the swabs on other healthy volunteers in order to explore changes in the microbiome.Overall, this is a telling study of administrative overreach that makes a case that institutional imperatives sometimes eclipse rational purposes.
A carefully reasoned and disturbing portrait of potential hazards of excessive regulation.Pub Date: April 4, 2023
ISBN: 9781953943217
Page Count: 316
Publisher: Rivertowns Books
Review Posted Online: Feb. 28, 2023
Review Program: Kirkus Indie
A revelatory meditation on shattering journeys.
Bearing witness to oppression.
Award-winning journalist and MacArthur Fellow Coates probes the narratives that shape our perception of the world through his reports on three journeys: to Dakar, Senegal, the last stop for Black Africans “before the genocide and rebirth of the Middle Passage”; to Chapin, South Carolina, where controversy erupted over a writing teacher’s use of Between the World and Me in class; and to Israel and Palestine, where he spent 10 days in a “Holy Land of barbed wire, settlers, and outrageous guns.” By addressing the essays to students in his writing workshop at Howard University in 2022, Coates makes a literary choice similar to the letter to his son that informed Between the World and Me; as in that book, the choice creates a sense of intimacy between writer and reader. Interweaving autobiography and reportage, Coates examines race, his identity as a Black American, and his role as a public intellectual. In Dakar, he is haunted by ghosts of his ancestors and “the shade of Niggerology,” a pseudoscientific narrative put forth to justify enslavement by portraying Blacks as inferior. In South Carolina, the 22-acre State House grounds, dotted with Confederate statues, continue to impart a narrative of white supremacy. His trip to the Middle East inspires the longest and most impassioned essay: “I don’t think I ever, in my life, felt the glare of racism burn stranger and more intense than in Israel,” he writes. In his complex analysis, he sees the trauma of the Holocaust playing a role in Israel’s tactics in the Middle East: “The wars against the Palestinians and their Arab allies were a kind of theater in which ‘weak Jews’ who went ‘like lambs to slaughter’ were supplanted by Israelis who would ‘fight back.’” Roiled by what he witnessed, Coates feels speechless, unable to adequately convey Palestinians’ agony; their reality “demands new messengers, tasked as we all are, with nothing less than saving the world.”
A revelatory meditation on shattering journeys.Pub Date: Oct. 1, 2024
ISBN: 9780593230381
Page Count: 176
Publisher: One World/Random House
Review Posted Online: Aug. 2, 2024
Kirkus Reviews Issue: Sept. 1, 2024
BOOK REVIEW
BOOK REVIEW
SEEN & HEARD
A fierce, penetrating, and empowering call for change.
Artist and activist Vaid-Menon demonstrates how the normativity of the gender binary represses creativity and inflicts physical and emotional violence.
The author, whose parents emigrated from India, writes about how enforcement of the gender binary begins before birth and affects people in all stages of life, with people of color being especially vulnerable due to Western conceptions of gender as binary. Gender assignments create a narrative for how a person should behave, what they are allowed to like or wear, and how they express themself. Punishment of nonconformity leads to an inseparable link between gender and shame. Vaid-Menon challenges familiar arguments against gender nonconformity, breaking them down into four categories—dismissal, inconvenience, biology, and the slippery slope (fear of the consequences of acceptance). Headers in bold font create an accessible navigation experience from one analysis to the next. The prose maintains a conversational tone that feels as intimate and vulnerable as talking with a best friend. At the same time, the author's turns of phrase in moments of deep insight ring with precision and poetry. In one reflection, they write, “the most lethal part of the human body is not the fist; it is the eye. What people see and how people see it has everything to do with power.” While this short essay speaks honestly of pain and injustice, it concludes with encouragement and an invitation into a future that celebrates transformation.
A fierce, penetrating, and empowering call for change. (writing prompt) (Nonfiction. 14-adult)Pub Date: June 2, 2020
ISBN: 978-0-593-09465-5
Page Count: 64
Publisher: Penguin Workshop
Review Posted Online: March 14, 2020
Kirkus Reviews Issue: April 1, 2020
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