A moving argument for a more focused, humane, and efficient system for conducting medical research.
The story of a painful but inspiring search for a cure for a fatal disease.
Dockser Marcus, a Pulitzer Prize–winning Wall Street Journal reporter, had finished a series on advances in cancer therapy when she endured the death of her mother to a rare cancer for which no treatment existed. The author’s research revealed that activists had often pressured the Food and Drug Administration to pay attention to diseases such as AIDS and allow community participants on hospital and government advisory committees. It was an effective approach, but the author found that the scientists called the shots. They were the experts who would design experiments and work at their own, careful pace. This lugubrious system has worked miracles, but it’s too slow if a loved one is sick. Dockser Marcus discovered others with the same experience who had organized to work with and even guide researchers. They called themselves “citizen scientists.” The author concentrates on the fight against the rare genetic defect Niemann-Pick disease type C, which affects only about 200 individuals in the U.S. and 500 globally. Often healthy at birth, affected children “progressively” lose the ability to walk, talk, and eat; most die by age 19. Dockser Marcus introduces us to the families, children, physicians, researchers, and FDA officials. Almost all are sympathetic. Rather than merely lobbying or raising money, parents have come together to search for treatments and suggest lines of research. Fiercely motivated, they have educated themselves, devouring medical journals so obsessively that some have written articles for these same journals. They have convinced researchers and government agencies to launch studies and then cooperated closely, not only volunteering their children, but also gathering far more data than the usual parent. The author ends her expert mixture of reportage and storytelling on a somewhat hopeful note. Promising treatments are in the pipeline, but there have been numerous bitter disappointments, and many affected children have suffered serious complications during trials.
A moving argument for a more focused, humane, and efficient system for conducting medical research.Pub Date: Feb. 14, 2023
ISBN: 9780399576133
Page Count: 256
Publisher: Riverhead
Review Posted Online: Jan. 20, 2023
Kirkus Reviews Issue: Feb. 15, 2023
BOOK REVIEW
BOOK REVIEW
A short, smart analysis of perhaps the most famous passage in American history reveals its potency and unfulfilled promise.
Words that made a nation.
Isaacson is known for expansive biographies of great thinkers (and Elon Musk), but here he pens a succinct, stimulating commentary on the Founding Fathers’ ode to “life, liberty, and the pursuit of happiness.” His close reading of the Declaration of Independence’s second sentence, published to mark the 250th anniversary of the document’s adoption, doesn’t downplay its “moral contradiction.” Thomas Jefferson enslaved hundreds of people yet called slavery “a cruel war against human nature” in his first draft of the Declaration. All but 15 of the document’s 56 signers owned enslaved people. While the sentence in question asserted “all men are created equal” and possess “unalienable rights,” the Founders “consciously and intentionally” excluded women, Native Americans, and enslaved people. And yet the sentence is powerful, Isaacson writes, because it names a young nation’s “aspirations.” He mounts a solid defense of what ought to be shared goals, among them economic fairness, “moral compassion,” and a willingness to compromise. “Democracy depends on this,” he writes. Isaacson is excellent when explaining how Enlightenment intellectuals abroad influenced the founders. Benjamin Franklin, one of the Declaration’s “five-person drafting committee,” stayed in David Hume’s home for a month in the early 1770s, “discussing ideas of natural rights” with the Scottish philosopher. Also strong is Isaacson’s discussion of the “edits and tweaks” made to Jefferson’s draft. As recommended by Franklin and others, the changes were substantial, leaving Jefferson “distraught.” Franklin, who emerges as the book’s hero, helped establish municipal services, founded a library, and encouraged religious diversity—the kind of civic-mindedness that we could use more of today, Isaacson reminds us.
A short, smart analysis of perhaps the most famous passage in American history reveals its potency and unfulfilled promise.Pub Date: Nov. 18, 2025
ISBN: 9781982181314
Page Count: 80
Publisher: Simon & Schuster
Review Posted Online: Aug. 29, 2025
Kirkus Reviews Issue: Oct. 1, 2025
BOOK REVIEW
BOOK REVIEW
BOOK REVIEW
SEEN & HEARD
A moving meditation on mortality by a gifted writer whose dual perspectives of physician and patient provide a singular...
A neurosurgeon with a passion for literature tragically finds his perfect subject after his diagnosis of terminal lung cancer.
Writing isn’t brain surgery, but it’s rare when someone adept at the latter is also so accomplished at the former. Searching for meaning and purpose in his life, Kalanithi pursued a doctorate in literature and had felt certain that he wouldn’t enter the field of medicine, in which his father and other members of his family excelled. “But I couldn’t let go of the question,” he writes, after realizing that his goals “didn’t quite fit in an English department.” “Where did biology, morality, literature and philosophy intersect?” So he decided to set aside his doctoral dissertation and belatedly prepare for medical school, which “would allow me a chance to find answers that are not in books, to find a different sort of sublime, to forge relationships with the suffering, and to keep following the question of what makes human life meaningful, even in the face of death and decay.” The author’s empathy undoubtedly made him an exceptional doctor, and the precision of his prose—as well as the moral purpose underscoring it—suggests that he could have written a good book on any subject he chose. Part of what makes this book so essential is the fact that it was written under a death sentence following the diagnosis that upended his life, just as he was preparing to end his residency and attract offers at the top of his profession. Kalanithi learned he might have 10 years to live or perhaps five. Should he return to neurosurgery (he could and did), or should he write (he also did)? Should he and his wife have a baby? They did, eight months before he died, which was less than two years after the original diagnosis. “The fact of death is unsettling,” he understates. “Yet there is no other way to live.”
A moving meditation on mortality by a gifted writer whose dual perspectives of physician and patient provide a singular clarity.Pub Date: Jan. 19, 2016
ISBN: 978-0-8129-8840-6
Page Count: 248
Publisher: Random House
Review Posted Online: Sept. 29, 2015
Kirkus Reviews Issue: Oct. 15, 2015
PERSPECTIVES
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