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
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: 320
Publisher: Avid Reader Press
Review Posted Online: Jan. 16, 2025
Kirkus Reviews Issue: Feb. 15, 2025
BOOK REVIEW
PERSPECTIVES
For Howard Zinn, long-time civil rights and anti-war activist, history and ideology have a lot in common. Since he thinks that everything is in someone's interest, the historian—Zinn posits—has to figure out whose interests he or she is defining/defending/reconstructing (hence one of his previous books, The Politics of History). Zinn has no doubts about where he stands in this "people's history": "it is a history disrespectful of governments and respectful of people's movements of resistance." So what we get here, instead of the usual survey of wars, presidents, and institutions, is a survey of the usual rebellions, strikes, and protest movements. Zinn starts out by depicting the arrival of Columbus in North America from the standpoint of the Indians (which amounts to their standpoint as constructed from the observations of the Europeans); and, after easily establishing the cultural disharmony that ensued, he goes on to the importation of slaves into the colonies. Add the laborers and indentured servants that followed, plus women and later immigrants, and you have Zinn's amorphous constituency. To hear Zinn tell it, all anyone did in America at any time was to oppress or be oppressed; and so he obscures as much as his hated mainstream historical foes do—only in Zinn's case there is that absurd presumption that virtually everything that came to pass was the work of ruling-class planning: this amounts to one great indictment for conspiracy. Despite surface similarities, this is not a social history, since we get no sense of the fabric of life. Instead of negating the one-sided histories he detests, Zinn has merely reversed the image; the distortion remains.
Pub Date: Jan. 1, 1979
ISBN: 0061965588
Page Count: 772
Publisher: Harper & Row
Review Posted Online: May 26, 2012
Kirkus Reviews Issue: Jan. 1, 1979
BOOK REVIEW
BOOK REVIEW
BOOK REVIEW
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