A CRISPR View of Human Genome Editing in the 21st Century

Scientists, policymakers, and bioethicists agree that the public should weigh in on the ethical issues raised by genomics and biotechnology. But it’s not always clear what role non-experts can play in these debates, or how scholars should measure public opinion about complex scientific issues. The gene-editing technology CRISPR-cas9 offers an excellent case to consider how the public is invited into and excluded from debates about promising and controversial new technologies. This dissertation advances our understanding of social and ethical dimensions of gene-editing by asking how the news media present CRISPR to the public, analyzing the role laid out for the public in media discourse about CRISPR, and investigating U.S. public attitudes about gene-editing using data from a national survey. Chapter 1 analyzes 304 articles from 8 ideologically diverse U.S. news sources to learn how CRISPR was framed in the news media in its early years (2012-2018). Most CRISPR coverage adopted a master frame I call “cautious optimism” consistently weighing both risks and benefits, but some veered into “boosterism,” framing that hypes possible benefits but ignores risks. Critical coverage of CRISPR was discernible though it was marginalized and under-represented. In general, coverage of CRISPR emphasized progress, profits and promises of cures, but generally steered clear of earlier decades’ worst tendencies (naïve genetic determinism, discrimination and perfectionism). Chapter 2 uses the news corpus to investigate the role of the public in the media narratives of CRISPR. Drawing on theories of expertise and lay publics developed by scholars in Science and Technology Studies (STS) and the Sociology of Scientific Knowledge, I argue that in the case of CRISPR, the hope for meaningful, policy-informing public engagement may be trapped in a temporal paradox wherein the time for the public to participate is always too soon, until it turns out to be too late. What appears as an earnest desire on the part of expert communities for the public to join in dialogue, discussion, or even consensus building about the future of CRISPR turns out to be illusory. A push and pull of inclusion and exclusion leaves the public no clear entry point to the discussion. Further, while some experts used public relations tactics to manage public opinion, others engaged in protective boundary work that had the effect of crowding publics out. The net effect of these dynamics is a public largely absent from the discourse and debates over gene-editing. Chapter 3 draws on nationally representative survey data to understand U.S. lay public perspectives on the development of gene-editing. Prior survey research about gene-editing asks how the technology may impact the respondent individually. To expand on this framing, we ask about respondents’ hopes and fears about the future of gene-editing for themselves, their families and society. We also go beyond asking simply whether respondents favor gene-editing by inquiring about their willingness to spend public money and contribute their own biospecimens to support gene-editing research. We find that public opinion is still somewhat underdeveloped, with most respondents neither strongly optimistic nor fearful and that trust in the healthcare system is an important predictor of attitudes about gene-editing. With the gene-editing revolution underway, the future of media framing and public inclusion in shaping the direction of this technology is uncertain, but this research identifies pitfalls to avoid and insights to build on to improve engagement moving forward.PhDHlth Svc Org & Plcy & Soc PhDUniversity of Michigan, Horace H. Rackham School of Graduate Studieshttp://deepblue.lib.umich.edu/bitstream/2027.42/169935/1/dbthiel_1.pd