Experiments in Democracy: Human Embryo Research and the Politics of Bioethics

  • J. Benjamin Hurlbut
Columbia University Press: 2017. 9780231179546 | ISBN: 978-0-2311-7954-6

One of the most celebrated paintings in Ohio's Cleveland Museum of Art is Twilight in the Wilderness. Frederic Edwin Church's panorama depicts a blazing sunset over shadowy mountains and a crimson lake. It signals a reverence for nature, but the blood reds hint at something darker. Church completed his landscape in 1860, on the eve of the American Civil War, and many believe that the fiery sky symbolizes the nation's expected conflagration.

Experiments in Democracy reminds me of this painting, in both its ambitious scope and its sense of unease. Science historian Benjamin Hurlbut offers a wide-angle history of US attempts at democratic deliberation on the ethics of human-embryo research. Painstakingly researched and spanning more than four decades — from the advent of in vitro fertilization in the 1970s to contemporary developments such as germline editing — the book draws attention to an intricate interplay between science and democracy.

More than 40 years of controversy surrounds research on human-embryo cells such as these. Credit: Yorgos Nikas/Biol. Reprod./SPL

Mediating this interplay are government-sponsored bioethics bodies such as the Ethics Advisory Board of the US Department of Health, Education, and Welfare in the 1970s and the National Institutes of Health Human Embryo Research Panel in the 1990s. These serve as “experiments in democracy” wherein social imaginings of science, democracy, and the correct relationship between them are 'co-produced'. Building on the terminology and work of other scholars at the nexus of science, technology and society, notably Sheila Jasanoff, Hurlbut laments that ethical deliberation around embryo research has always been too focused on the moral status of the embryo, with science supplying 'facts' and bioethics bodies providing 'correct' reasoning.

Standing in for the public, these bioethics bodies uncritically accepted science as an extra-political authority and used it to delimit the range of appropriate public reasons. That crowded out other legitimate perspectives, such as social-justice considerations. Although these institutions helped to pave the way for human embryonic stem-cell research and widespread acceptance of in vitro fertilization, Hurlbut argues that they also narrowed the “repertoire of democratic imagination” necessary to guide our march towards a shared technological future.

Regret and lost opportunities are a leitmotif in the book. Yet, like Church's hidden brushstrokes — which lessen the painter's presence in his luminist landscape — Hurlbut's repeated use of the passive voice at key moments makes it difficult to discern who the agents were for these historical developments. In writing about scientific knowledge, for example, Hurlbut says that scientists' claims are privileged because they “are treated as de facto reasonable”. But, he notes, “those views that are marked as depending upon moral pictures of the world that are not accessible to others are de facto excluded as nonpublic reasons” — that is, as too doctrinaire and subjective to ground public policy. But who is doing this treating, marking, excluding and privileging? Is it the secular members of bioethics bodies? Is it the government sponsors who draft committee agendas and statements of task? Hurlbut obscures responsibility for these outcomes and offers no clear alternative account of how the social imaginings of science and democracy should have been co-produced.

Without any alternative positive account, one may wonder at the end of Experiments in Democracy what the prospects are for future deliberations on human-embryo research. With fortuitous timing, the book arrives just as the administration of Donald Trump enters Washington DC, with two ideological opponents of embryonic stem-cell research in tow: vice-president Mike Pence and Tom Price, nominee for health secretary. Many fear a revival of the 'embryo wars' of President George W. Bush's tenure, and the restrictive federal research policies introduced in 2001 (or worse). Both stunted progress in US stem-cell research, introduced great uncertainty among early-career scientists and biotechnology investors, and upended state funding priorities. How might we apply Hurlbut's insights to the battles to come?

To be fair, it is not Hurlbut's intent to issue ethical prescriptions for the future. His only normative commitment in this book is to the question of how we should understand democratic science, not what we should do politically. He wants us to interrogate the idea of “right public reason” and widen the field of potential participants. In my view, however, our greatest collective challenge is not constructing a more inclusive ideal of public reasoning. Rather, it lies in finding cause to believe that, given human nature, divisive social inequities and the current political climate, US citizens are capable of realizing such an ideal. Sadly, social media and the Internet, once embraced as tools for broadening democratic discourse, are now serving mainly to narrow and harden people's views.

At the opposite end of the Cleveland Museum hangs the enormous 'pixelated' portrait Paul III (1996) by the artist (and supporter of stem-cell research) Chuck Close. Close created the work by superimposing a grid over a photograph of the sitter and painting abstract forms approximating the details and colours in each square. The result is a face 'mapped' in cells — at arm's length impossible to parse, but at a distance coalescing into a man's cool stare. Close has described the effect of his portraits as the democratization of life experience. Yet there is also something unsettling about this piecemeal portraiture. It could be an apt metaphor for the coming embryo-research controversy in the United States: citizens inhabiting isolated bubbles of (mis)information who, through the aggregation of their votes, coalesce into a picture of democratic agency that one might find unappealing.