The DOI matches its Crossref record; 77 of the 77 references it cites were found in a registry or an index.
Patients-in-Waiting: Living between Sickness and Health in the Genomics Era
Abstract
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.
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Cites
The Discovery of Grounded Theory: Strategies for Qualitative Research
Glaser, B. G., & Strauss, A. L. (2017) · Aldine (Routledge reprint) · doi:10.4324/9780203793206 · Cited by 25,789
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Glaser, B. G., & Strauss, A. L. (2017) · The Discovery of Grounded Theory · doi:10.4324/9780203793206-1 · Cited by 8,344
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DeFleur, M. L., & Goffman, E. (1964) · Social Forces · doi:10.2307/2575995 · Cited by 6,420
Sorting Things Out: Classification and Its Consequences
Bowker, G. C., & Star, S. L. (1999) · doi:10.7551/mitpress/6352.001.0001 · Cited by 6,188
The History of Sexuality: An Introduction
Foucault, M. (2012) · Cited by 5,375
The Body Multiple: Ontology in Medical Practice
Mol, A. (2002) · doi:10.1215/9780822384151 · Cited by 4,381
Chronic illness as biographical disruption
Bury, M. (1982) · Sociology of Health & Illness · doi:10.1111/1467-9566.ep11339939 · Cited by 3,960
The illness narratives: suffering, healing, and the human condition
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Cited by
Technical report: ethical and policy issues in genetic testing and screening of children
Ross, L. F., Saal, H. M., David, K. L., & Anderson, R. R. (2013) · Genetics in Medicine · doi:10.1038/gim.2012.176 · Cited by 448
Kemper, A. R., Brosco, J., Comeau, A. M., Green, N. S., Grosse, S. D., Jones, E., Kwon, J. M., Lam, W. K. K., Ojodu, J., Prosser, L. A., et al. (2017) · Genetics in Medicine · doi:10.1038/gim.2016.68 · Cited by 109
Technologies and Health Inequities
Timmermans, S., & Kaufman, R. (2020) · Annual Review of Sociology · doi:10.1146/annurev-soc-121919-054802 · Cited by 83
Self-citationSabatello, M., & Appelbaum, P. S. (2017) · Hastings Center Report · doi:10.1002/hast.736 · Cited by 79
Adrenoleukodystrophy Newborn Screening in California Since 2016: Programmatic Outcomes and Follow-Up
Matteson, J., Sciortino, S., Feuchtbaum, L., Bishop, T., Olney, R. S., & Tang, H. (2021) · International Journal of Neonatal Screening · doi:10.3390/ijns7020022 · Cited by 50
Metadata
- Authors
- Timmermans, S., & Buchbinder, M.
- Venue
- Journal of Health and Social Behavior
- Publisher
- SAGE Publications
- Published
- 2010-12
- Volume
- 51
- Issue
- 4
- Pages
- 408-423
- ISSN
- 0022-1465 (ISSN-L)
- 2150-6000
- OpenAlex
- W2114487880
- Cited by
- 391
- References
- 77
- FWCI
- 8.21
- Type
- journal article
- Language
- en
- Open access
- closed
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Bibliographic data: Semantic Scholar, OpenAlex, Crossref.
Contains information from the Semantic Scholar Academic Graph Datasets, made available under the ODC Attribution License (ODC-BY 1.0).
Semantic Scholar’s data is described in: Kinney, R., et al. (2023). The Semantic Scholar Open Data Platform. arXiv:2301.10140.
