Literature DB >> 17373128

Becoming in-formed: genetic counselling, ambiguity and choice.

Joanna Latimer1.   

Abstract

The paper presents findings from an ethnography of dysmorphology, a specialism in genetic medicine, to explore genetic counselling as a process through which parents 'become informed.' Current professional and policy debate over the use of genetic technology in medicine emphasises the need for informed choice making, and for genetic services that provide parents with what is referred to as 'non-directive genetic counselling.' In the paper the process of becoming informed is shown to be very specific and to have its own effects. Specifically, genetics is performed in dysmorphology as a space of ambiguity and uncertainty. In addition, parents are engaged by the clinic as participants in the very processes through which their child, and perhaps their family, are clinically classified. The paper examines the effects of parents' immersion in this clinical space of deferral to suggest how the need for reproductive choice, and calculation, is predicated upon clinical processes that shift parents between the experience of definition and uncertainty. The paper thus troubles simple stories about autonomous and informed choice, particularly reproductive choice, as icons of contemporary versions of what it is to be fully human.

Entities:  

Mesh:

Year:  2007        PMID: 17373128     DOI: 10.1007/s10728-006-0035-3

Source DB:  PubMed          Journal:  Health Care Anal        ISSN: 1065-3058


  10 in total

Review 1.  Culture, the 'sick role' and the consumption of health.

Authors:  Chris Shilling
Journal:  Br J Sociol       Date:  2002-12

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Authors:  D R Buckholdt; J F Gubrium
Journal:  Hum Organ       Date:  1979

3.  "Expert patient"--dream or nightmare?

Authors:  Joanne Shaw; Mary Baker
Journal:  BMJ       Date:  2004-03-27

4.  Non-directive genetic counselling.

Authors:  A Clarke
Journal:  Lancet       Date:  1991-12-14       Impact factor: 79.321

Review 5.  Genetic counseling: clinical and ethical challenges.

Authors:  M B Mahowald; M S Verp; R R Anderson
Journal:  Annu Rev Genet       Date:  1998       Impact factor: 16.830

6.  Patient autonomy and the challenge of clinical uncertainty.

Authors:  Mark Parascandola; Jennifer Hawkins; Marion Danis
Journal:  Kennedy Inst Ethics J       Date:  2002-09

Review 7.  A policy analysis of the Expert Patient in the United Kingdom: self-care as an expression of pastoral power?

Authors:  P M Wilson
Journal:  Health Soc Care Community       Date:  2001-05

8.  Expansion and uncertainty: cystic fibrosis, classification and genetics.

Authors:  Adam M Hedgecoe
Journal:  Sociol Health Illn       Date:  2003-01

9.  The 'expert patient': empowerment or medical dominance? The case of weight loss, pharmaceutical drugs and the Internet.

Authors:  N J Fox; K J Ward; A J O'Rourke
Journal:  Soc Sci Med       Date:  2005-03       Impact factor: 4.634

10.  Diagnosis, dysmorphology, and the family: knowledge, motility, choice.

Authors:  Joanna Latimer
Journal:  Med Anthropol       Date:  2007 Apr-Jun
  10 in total
  2 in total

1.  The use of heuristics in genetic testing decision-making: A qualitative interview study.

Authors:  Bettina Maria Zimmermann; David Martin Shaw; Bernice Elger; Insa Koné
Journal:  PLoS One       Date:  2021-11-30       Impact factor: 3.240

2.  From 'implications' to 'dimensions': science, medicine and ethics in society.

Authors:  Martyn D Pickersgill
Journal:  Health Care Anal       Date:  2013-03
  2 in total

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