Negotiating identity at the intersection of paediatric and genetic medicine: The parent as facilitator, narrator and patient

Sociology of Health and Illness

Volumn 36, Issue 1, 2014, Pages 1-14

  Dimond, Rebecca ^a  

^a CARDIFF UNIVERSITY   (United Kingdom)

Author keywords

Genetics; Identity; Kinship; Medical work; Paediatrics

Indexed keywords

ADOLESCENT; ANAMNESIS; ARTICLE; CHILD; CHROMOSOME DELETION 22Q11; FEMALE; GENETIC COUNSELING; GENETICS; HUMAN; IDENTITY; INFANT; KINSHIP; MALE; MEDICAL WORK; PARENT; PEDIATRICS; PRESCHOOL CHILD; ROLE PLAYING;

GENETICS; IDENTITY; KINSHIP; MEDICAL WORK; PAEDIATRICS;

22Q11 DELETION SYNDROME; ADOLESCENT; CHILD; CHILD, PRESCHOOL; FEMALE; GENETIC COUNSELING; HUMANS; INFANT; MALE; MEDICAL HISTORY TAKING; PARENTS; ROLE;

EID: 84892503378     PISSN: 01419889     EISSN: 14679566     Source Type: Journal    
DOI: 10.1111/1467-9566.12035     Document Type: Article

References (60)

1. Arribas-Ayllon, M., Sarangi, S. and Clarke, A. (2008) Managing self-responsibility through other-oriented blame: family accounts of genetic testing, Social Science & Medicine, 66, 7, 1521-32.
2. Armstrong, D., Michie, S. and Marteau, T. (1998) Revealed identity: a study of the process of genetic counselling, Social Science and Medicine, 47, 11, 1653-8.
3. Atkinson, P. (1984) Training for certainty, Social Science & Medicine, 19, 9, 949-56.
4. Atkinson, P. (1995) Medical Talk and Medical Work: The Liturgy of the Clinic. London: Sage.
5. Atkinson, P. and Coffey, A. (1997) Analysing documentary realities. In Silverman, D. (ed.) Qualitative Research: Theory, Method and Practice: Sage.
6. Atkinson, P., Parsons, E. and Featherstone, K. (2001) Professional constructions of family and kinship in medical genetics, New Genetics and Society, 20, 1, 5-24.
7. Berg, M. (1992) The construction of medical disposals: medical sociology and medical problem solving in clinical practice, Sociology of Health & Illness, 14, 2, 151-80.
8. Cahill, P. and Papageorgiou, A. (2007) Triadic communication in the primary care paediatric consultation: a review of the literature, British Journal of General Practice, 57, 544, 904-11.
9. Davis, A.G. (1982) Children in Clinics: A Sociological Analysis of Medical Work with Children. London: Tavistock.
10. Dillard, J.P. and Tiuczek, A. (2005) Information flow after a positive newborn screening for cystic fibrosis, Journal of Pediatrics, 147, 3 Suppl., S94-7.
11. Dimond (2011) Multiple meanings of a rare genetic disorder: 22q11 deletion syndrome. Unpublished PhD thesis. Cardiff: University of Cardiff.
12. Featherstone, K., Latimer, J., Atkinson, P., Pilz, D., et al. (2005) Dysmorphology and the spectacle of the clinic, Sociology of Health & Illness, 27, 5, 551-74.
13. Featherstone, K., Atkinson, P., Bharadwaj, A. and Clarke, A. (2006) Risky Relations: Family, Kinship and the New Genetics. Oxford: Berg.
14. Featherstone, K., Gregory, M. and Atkinson, P. (2007) The moral and sentimental work of the clinic: the case of genetic syndromes. In Atkinson, P., Glasner, P. and Greenslade, H. (eds) New Genetics, New Identities, Oxford: Routledge.
15. Foucault, M. (1973) The Birth of the Clinic: An Archaeology of Medical Perception. London: Tavistock.
16. Fox, R. (1959) Experiment Perilous: Physicians and Patients Facing the Unknown. Glencoe: Free Press.
17. Freidson, E. (1970) Profession of Medicine: A Study of the Sociology of Applied Knowledge. New York: Harper and Row.
18. Gabe, J., Olumide, G. and Bury, M. (2004) It takes three to tango: a framework for understanding patient partnership in paediatric clinics, Social Science & Medicine, 59, 5, 1071-9.
19. Goffman, E. (1959) The Presentation of Self in Everyday Life. London: Penguin.
20. Goffman, E. (1968) Stigma. Notes on the Management of Spoiled Identity. Harmondsworth: Penguin.
21. Halder, A., Jain, M., Kabra, M. and Gupta, N. (2008) Mosaic 22q11.2 microdeletion syndrome: diagnosis and clinical manifestations of two cases, Molecular Cytogenetics, 1, 18. doi:10.1186/1755-8166-1-18.
22. Hallowell, N., Foster, C., Eeles, R., Ardern-Jones, A., et al. (2003) Balancing autonomy and responsibility: the ethics of generating and disclosing genetic information, Journal of Medical Ethics, 29, 2, 74-9.
23. Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C., et al. (2005) Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems, Clinical Genetics, 67, 6, 492-502.
24. Hallowell, N., Arden-Jones, A., Eeles, R., Foster, C., et al. (2006) Guilt, blame and responsibility: men's understanding of their role in the transmission of BRCA1/2 mutations within their family, Sociology of Health & Illness, 28, 7, 969-88.
25. Hammersley, M. and Atkinson, P. (2007) Ethnography: Principles in Practice, Oxford: Routledge.
26. Haraway, D. (1991) Simians, Cyborgs and Women: The Reinvention of Nature, New York: Routledge.
27. Health Talk Online (2012) Home page. Available at http://www.healthtalkonline.org/ (accessed 19 June 2012).
28. Hodgson, J. and Gaff, C. (2012) Enhancing family communication about genetics: ethical and professional dilemmas. Journal of Genetic Counselling. doi. 10.1007/s10897-012-9514-x. [Epub ahead of print].
29. Keating, P. and Cambrosio, A. (2003) Biomedical Platforms: Realigning the Normal and the Pathological in Late-twentieth-century Medicine. Cambridge: MIT Press.
30. Kingston, K. and Bailey, C. (2009) Assessing the pain of people with a learning disability, British Journal of Nursing, 18, 7, 420-3.
31. Latimer, J., Featherstone, K., Atkinson, P., Clarke, A., et al. (2006) Re-birthing the clinic: the interaction of clinical judgment and genetic technology in the production of medical science, Science, Technology & Human Values, 31, 5, 599-630.
32. McLaughlin, J. (2005) Exploring diagnostic processes: social science perspectives, Archives of Disease in Childhood, 90, 3, 284-7.
33. McLaughlin, J. and Clavering, E.K. (2011) Questions of kinship and inheritance in pediatric genetics: substance and responsibility, New Genetics and Society, 30, 4, 399-413.
34. McLaughlin, J. and Clavering, E.K. (2012) Visualising difference, similarity and belonging in paediatric genetics, Sociology of Health & Illness, 34, 3, 459-74.
35. Miller, F.A., Ahern, C., Ogilvie, J., Giacomini, M., et al. (2005) Ruling in and ruling out: implications of molecular genetic diagnoses for disease classification, Social Science & Medicine, 61, 12, 2536-45.
36. Mol, A. (2002) The Body Multiple: Ontology in Medical Practice. Durham: Duke University Press.
37. Murphy, K.C. and Scambler, P. (2005) Velo-cardio-facial Syndrome: A Model for Understanding Microdeletion Disorders. Cambridge: Cambridge University Press.
38. National Health Service (2012) Telling stories. Available at http://www.tellingstories.nhs.uk/about_us.asp (Accessed 19 June 2012).
39. Nelkin, D. and Lindee, M.S. (1995) The DNA Mistique. New York: W.H. Freeman.
40. Nettleton, S. (1995) The Sociology of Health and Illness. Cambridge: Polity Press.
41. Novas, C. and Rose, N. (2000) Genetic risk and the birth of the somatic individual, Economy and Society, 29, 4, 485-513.
42. Nukaga, Y. (2002) Between tradition and innovation in new genetics: the continuity of medical pedigrees and the development of combination work in the case of Huntington's disease, New Genetics and Society, 21, 1, 39-64.
43. Parker, M and Lucassen, A. (2003) Concern for families and individuals in clinical genetics, Journal of Medical Ethics, 29, 70-73.
44. Parsons, T. (1951) The Social System. London: Routledge & Kegan Paul.
45. Pearson, S.D. and Raeke, L.H. (2000) Patients' trust in physicians: many theories, few measures, and little data, Journal of General Internal Medicine, 15, 7, 509-513.
46. Polgar, S. and Thomas, S.A. (2000) Introduction to Research in the Health Sciences. London: Churchill Livingstone.
47. Polzer, J. and Robertson, A. (2010) Seeing and knowing in twenty-first century genetic medicine: the clinical pedigree as epistemological tool and hybrid risk technique, New Genetics and Society, 29, 2, 133-47.
48. Rabeharisoa, V. and Bourret, P. (2009) Staging and weighting evidence in biomedicine: comparing clinical practices in cancer genetics and psychiatric genetics, Social Studies of Science, 39, 5, 691-715.
49. Reardon, W. and Donnai, D. (2007) Dysmorphology demystified, Archives of Disease in Childhood, 92, 3, F225-9.
50. Robin, N.H. and Shprintzen, R.J. (2005) Defining the clinical spectrum of deletion 22q11.2, Journal of Pediatrics, 147, 1, 90-6.
51. Rosenthal, E.T., Biesecker, L.G. and Biesecker, B.B. (2001) Parental attitudes toward a diagnosis in children with unidentified multiple congenital anomaly syndromes, American Journal of Medical Genetics, 103, 2, 106-114.
52. Scambler, P.J. (2000) The 22q11 deletion syndromes, Human Molecular Genetics, 9, 16, 2421-6.
53. Shaw, A. (2003) Interpreting images: diagnostic skill in the genetics clinic, Journal of the Royal Anthropological Institute, 9, 1, 39-55.
54. Shprintzen, R.J. and Golding-Kushner, K.J. (2008) Velo-cardio-facial Syndrome Volume I, San Diego: Plural.
55. Silverman, D. (1987) Communication and Medical Practice. London: Sage.
56. Somerville, C., Featherstone, K., Hemingway, H., Timmis, A., et al. (2008) Performing stable angina pectoris: an ethnographic study, Social Science & Medicine, 66, 7, 1497-508.
57. Spradley, J.P. (1979) The Ethnographic Interview. New York: Holt, Rinehart and Winston.
58. Strong, P.M. (1979) The Ceremonial Order of the Clinic: Parents, Doctors and Medical Bureaucracies. London: Routledge.
59. Todd, S. and Jones, S. (2003) Mum's the word!': maternal accounts of dealings with the professional world, Journal of Applied Research in Intellectual Disabilities, 16, 3, 229-44.
60. Vailly, J. (2006) Genetic screening as a technique of government: the case of neonatal screening for cystic fibrosis in France, Social Science & Medicine, 63, 12, 3092-101.