Ethics by Committee: A History of Reasoning Together about Medicine, Science, Society, and the State by Noortje Jacobs (review)

Abstract

Reviewed by:

• Ethics by Committee: A History of Reasoning Together about Medicine, Science, Society, and the State by Noortje Jacobs
• Simon N. Whitney

Noortje Jacobs. Ethics by Committee: A History of Reasoning Together about Medicine, Science, Society, and the State. Chicago: University of Chicago Press, 2022. xiv + 290 pp. Ill. $35.00 ( 978-0-226-81932-7).

In the decades after World War II, advances in medical science presented developed countries with one conundrum after another. In Ethics by Committee, Noortje Jacobs provides a careful, thoughtful review of the evolution of Dutch medical ethics from its wobbly beginnings to the carefully structured system that was in place by the end of the century. Her book is a treat, not just for historians of the topic but for anyone who is interested in how societies grapple with evolving issues that will never admit of a final answer.

In the postwar period, Dutch doctors, like doctors everywhere, were still accustomed to their medical judgments being considered beyond question. Early ethicists attacked this paternalism. At the same time, Dutch patients became increasingly mondig, which Jacobs defines as "mouthy, assertive, mature" (p. 83). The mondig patient wanted—with good reason—to play a part in their own medical decisions. The decisions themselves became more complex with new interventions, especially at the beginning of life, with artificial insemination and other reproductive technologies, and at the end, with families and patients alike questioning the value of life prolonged on a machine. Dutch cultural and political traditions strongly colored these debates over ethics in clinical medicine, and Jacobs reviews them with admirable clarity.

The Dutch development of research oversight, in contrast, owed more to international trends. While specific Dutch personalities and traditions played a significant part, the American example was at least as important. It served as both a horror story, particularly in the Tuskegee syphilis experiment, and a model, with the development in the United States of institutional review boards, which are generally known in the rest of the world as research ethics committees. Research funding also gave the U.S. model an outsized importance, for American largesse was restricted to institutions that had set up their own review committees along the American model (p. 151). The international flowering of oversight led, in time, to an equally universal degradation of review from an attempt to ensure ethical research into a bureaucracy with boxes to check and forms to complete. Dutch ethical ideals were not immune, and they, too, fell victim to this apparently inexorable decay. Jacobs notes that in 2001 Heleen Dupuis, famous doyenne of [End Page 522] the Dutch health ethics movement, cried out that Dutch ethics committees had turned into "bureaucratic straightjackets" in which moral pathos was replaced by "managerial arrogance and a mania for organization" (p. 172). In response to complaints about "the supposedly excessive bureaucratic demands" of contemporary ethics review (p. 5), Jacobs cites the usual rebuttal made by ethicists. In their view, the horrors of the Nazi concentration camps and the American syphilis experiment show that we must have this system of review (pp. 5–6).

These horror stories, and others as well, are ample proof that some system of review is needed—but not necessarily this system. The underlying problem with ethics review as conducted today is common to any system of regulation set up in response to scandals. These regulators will naturally do all they can to avoid further scandals, and their zealous work inevitably burdens the regulated—in this case medical scientists—more than was ever intended. The solution to this problem is beyond the scope of this review and is in any case a problem of public policy, not of history or, for that matter, ethics. In any case, occasional missteps like this are inevitable when a historian takes on such a complex topic.

It would be unfair to expect any historian to have deep expertise in the specific topic under discussion. We hope instead for a clear description of the roles that people and institutions played as the society struggled to meet evolving challenges by adopting new laws, new organizations, and new beliefs and understandings. Jacobs succeeds brilliantly in this endeavor, and we are richer as...