Patients-in-Waiting: Living between Sickness and Health in the Genomics Era

What are the social consequences of the recent expansion of newborn screening in the United States? The adoption of new screening technologies has generated diagnostic uncertainty about the nature of screening targets, making it unclear not only whether a newborn will develop a disease but also what...

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Bibliographic Details
Published in:Journal of health and social behavior 2010-12, Vol.51 (4), p.408-423
Main Authors: Timmermans, Stefan, Buchbinder, Mara
Format: Article
Language:English
Subjects:
Adoption
Biological and medical sciences
Clinics
Colleges & universities
Developmental Delays
Diagnostic systems
Diagnostic Tests
Disease
Diseases
Family (Sociological Unit)
Genetic Predisposition to Disease - psychology
Genetic screening
Genetics
Health
Health Problems
Humans
Illnesses
Infant, Newborn
Infants
Intellectual disabilities
Intellectual Disability
Internal Medicine
Interviews
Liminality
Medical diagnosis
Medical genetics
Medical research
Medical sciences
Medical screening
Medical Services
Medicine
Meetings
Neonatal diseases
Neonatal Screening
Neonates
Newborn babies
Newborns
Parent Attitudes
Parents
Parents & parenting
Parents - psychology
Pathology
Patients
Physicians
Prevention and actions
Public health. Hygiene
Public health. Hygiene-occupational medicine
Schemata (Cognition)
Screening
Screening Tests
Social Experience
Specialists
Specific populations (family, woman, child, elderly…)
Surveillance
Symptoms
Technological Advancement
Tests
Uncertainty
United States
Young Children
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Description
Summary:What are the social consequences of the recent expansion of newborn screening in the United States? The adoption of new screening technologies has generated diagnostic uncertainty about the nature of screening targets, making it unclear not only whether a newborn will develop a disease but also what the condition actually is. Based on observations in a genetics clinic and in-depth interviews with parents and geneticists, we examine how parents and clinical staff work out the social significance of uncertain newborn screening results. We find that some newborns will experience a specific trajectory of prolonged liminality between a state of normal health and pathology. Based on a review of related literatures, we suggest "patients-in-waiting" as an umbrella concept for those under medical surveillance between health and disease.
ISSN:0022-1465
2150-6000
DOI:10.1177/0022146510386794