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
Cogent, well-timed ideas for meeting today’s biggest challenges.
Helping liberals get out of their own way.
Klein, a New York Times columnist, and Thompson, an Atlantic staffer, lean to the left, but they aren’t interrogating the usual suspects. Aware that many conservatives have no interest in their opinions, the authors target their own side’s “pathologies.” Why do red states greenlight the kind of renewable energy projects that often languish in blue states? Why does liberal California have the nation’s most severe homelessness and housing affordability crises? One big reason: Liberal leadership has ensnared itself in a web of well-intentioned yet often onerous “goals, standards, and rules.” This “procedural kludge,” partially shaped by lawyers who pioneered a “democracy by lawsuit” strategy in the 1960s, threatens to stymie key breakthroughs. Consider the anti-pollution laws passed after World War II. In the decades since, homeowners’ groups in liberal locales have cited such statutes in lawsuits meant to stop new affordable housing. Today, these laws “block the clean energy projects” required to tackle climate change. Nuclear energy is “inarguably safer” than the fossil fuel variety, but because Washington doesn’t always “properly weigh risk,” it almost never builds new reactors. Meanwhile, technologies that may cure disease or slash the carbon footprint of cement production benefit from government support, but too often the grant process “rewards caution and punishes outsider thinking.” The authors call this style of governing “everything-bagel liberalism,” so named because of its many government mandates. Instead, they envision “a politics of abundance” that would remake travel, work, and health. This won’t happen without “changing the processes that make building and inventing so hard.” It’s time, then, to scrutinize everything from municipal zoning regulations to the paperwork requirements for scientists getting federal funding. The authors’ debut as a duo is very smart and eminently useful.
Cogent, well-timed ideas for meeting today’s biggest challenges.Pub Date: March 18, 2025
ISBN: 9781668023488
Page Count: 288
Publisher: Avid Reader Press
Review Posted Online: Jan. 16, 2025
Kirkus Reviews Issue: Feb. 15, 2025
BOOK REVIEW
PERSPECTIVES
SEEN & HEARD
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