Show Summary Details
Page of

When public and private narratives diverge: Media, policy advocacy, and the paradoxes of newborn screening policy 

When public and private narratives diverge: Media, policy advocacy, and the paradoxes of newborn screening policy
Chapter:
When public and private narratives diverge: Media, policy advocacy, and the paradoxes of newborn screening policy
Author(s):

Rachel Grob

, and Mark Schlesinger

DOI:
10.1093/med/9780198806660.003.0023
Page of

PRINTED FROM OXFORD MEDICINE ONLINE (www.oxfordmedicine.com). © Oxford University Press, 2021. All Rights Reserved. Under the terms of the licence agreement, an individual user may print out a PDF of a single chapter of a title in Oxford Medicine Online for personal use (for details see Privacy Policy and Legal Notice).

date: 06 May 2021

Individuals experience illness and healthcare in diverse ways. Advocates striving to create system change, however, typically simplify representations of patient experience. These ‘crafted’ public narratives better accord with journalists’ ideals of compelling, coherent, attention-grabbing stories. But condensing diverse experiences into univocal narratives has costs: some patients’ voices are silenced, and vital ethical issues are overlooked. This chapter uses a case study of advocacy around newborn screening (NBS) to explore the origins and implications of crafted public narratives. It traces the emergence of a single ‘urgency narrative’ used by advocates to promote expanded screening and compares its impact on media coverage and policy-making across the United States and among five English-speaking nations. It shows that crafted narratives are most influential in countries where NBS policies are set subnationally, since geographic variation both fosters advocates’ search for compelling narratives and makes those narratives more evocative, enhancing their impact on policy-making.

Access to the complete content on Oxford Medicine Online requires a subscription or purchase. Public users are able to search the site and view the abstracts for each book and chapter without a subscription.

Please subscribe or login to access full text content.

If you have purchased a print title that contains an access token, please see the token for information about how to register your code.

For questions on access or troubleshooting, please check our FAQs, and if you can't find the answer there, please contact us.