title: Exploring informed choice in the context of prenatal testing: findings from a qualitative study.
abstract: OBJECTIVE
  This study explored whether and how a sample of women made informed choices about prenatal testing for foetal anomalies; its aim was to provide insights for future health policy and service provision.
  
  
  METHODS
  We conducted semi-structured interviews with 38 mothers in Ottawa, Ontario, all of whom had been offered prenatal tests in at least one pregnancy. Using the Multi-dimensional Measure of Informed Choice as a general guide to analysis, we explored themes relevant to informed choice, including values and knowledge, and interactions with health professionals.
  
  
  RESULTS
  Many, but not all, participants seemed to have made informed decisions about prenatal testing. Values and knowledge were interrelated and important components of informed choice, but the way they were discussed differed from the way they have been presented in scientific literature. In particular, 'values' related to expressions of women's moral views or ideas about 'how life should be lived' and 'knowledge' related to the ways in which women prioritized and interpreted factual information, through their own and others' experiences and in 'thinking through' the personal implications of testing. While some women described non-directive discussions with health professionals, others perceived testing as routine or felt pressured to accept it.
  
  
  CONCLUSIONS
  Our findings suggest a need for maternity care providers to be vigilant in promoting active decision making about prenatal testing, particularly around the consideration of personal implications. Further development of measures of informed choice may be necessary to fully evaluate decision support tools and to determine whether prenatal testing programmes are meeting their objectives.
authors.affiliation: Department of Epidemiology & Community Medicine, University of Ottawa, Ottawa, ON, Canada. bpotter@uottawa.ca
authors.forename: Beth K
authors.initials: BK
authors.lastname: Potter
authors.forename: Natasha
authors.initials: N
authors.lastname: O'Reilly
authors.forename: Holly
authors.initials: H
authors.lastname: Etchegary
authors.forename: Heather
authors.initials: H
authors.lastname: Howley
authors.forename: Ian D
authors.initials: ID
authors.lastname: Graham
authors.forename: Mark
authors.initials: M
authors.lastname: Walker
authors.forename: Doug
authors.initials: D
authors.lastname: Coyle
authors.forename: Yelena
authors.initials: Y
authors.lastname: Chorny
authors.forename: Mario
authors.initials: M
authors.lastname: Cappelli
authors.forename: Isabelle
authors.initials: I
authors.lastname: Boland
authors.forename: Brenda J
authors.initials: BJ
authors.lastname: Wilson
mesh_terms: D000025:Abortion, Eugenic; D000328:Adult; D002755:Choice Behavior; D003955:Diagnostic Tests, Routine; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007258:Informed Consent / Q000523:psychology / Q000706:statistics & numerical data*; D008875:Middle Aged; D009014:Morals; D009864:Ontario; D010342:Patient Acceptance of Health Care / Q000523:psychology* / Q000706:statistics & numerical data; D011247:Pregnancy; D011264:Pregnancy Trimesters; D037841:Pregnant People / Q000523:psychology*; D011295:Prenatal Care; D011296:Prenatal Diagnosis / Q000379:methods / Q000706:statistics & numerical data*; D011369:Professional-Patient Relations; D036301:Qualitative Research; D012307:Risk Factors; D055815:Young Adult
references.citation: Soc Sci Med. 1997 Oct;45(7):979-89
references.pmid: 9257391
references.citation: BMC Public Health. 2006 Apr 13;6:96
references.pmid: 16611368
references.citation: Sci Technol Human Values. 1998 Winter;23(1):45-70
references.pmid: 11660551
references.citation: Can Fam Physician. 2000 Mar;46:614-20
references.pmid: 10752000
references.citation: BMJ. 2003 Sep 27;327(7417):736-40
references.pmid: 14512487
references.citation: Patient Educ Couns. 2002 Sep;48(1):87-91
references.pmid: 12220754
references.citation: Patient Educ Couns. 2006 Oct;63(1-2):110-7
references.pmid: 16242899
references.citation: Clin Genet. 2005 Apr;67(4):303-13
references.pmid: 15733266
references.citation: Genet Med. 2005 May-Jun;7(5):332-8
references.pmid: 15915085
references.citation: Prenat Diagn. 2004 Aug;24(8):613-8
references.pmid: 15305348
references.citation: Health Policy. 2004 Jan;67(1):15-24
references.pmid: 14726004
references.citation: Am J Law Med. 2002;28(2-3):233-70
references.pmid: 12197464
references.citation: CMAJ. 1999 Aug 24;161(4):381-5
references.pmid: 10478161
references.citation: Soc Sci Med. 2005 Nov;61(9):1983-92
references.pmid: 15899542
references.citation: Aust N Z J Obstet Gynaecol. 2006 Oct;46(5):433-9
references.pmid: 16953859
references.citation: Cochrane Database Syst Rev. 2003;(2):CD001431
references.pmid: 12804407
references.citation: J Med Screen. 2003;10(3):107-11
references.pmid: 14561260
references.citation: Patient Educ Couns. 2005 Mar;56(3):302-12
references.pmid: 15721973
references.citation: Soc Sci Med. 1998 Apr;46(8):1067-76
references.pmid: 9579758
references.citation: Lancet. 1998 Jan 24;351(9098):242-7
references.pmid: 9457093
references.citation: Genet Test. 2006 Summer;10(2):131-8
references.pmid: 16792517
references.citation: J Genet Couns. 1999 Aug;8(4):217-33
references.pmid: 26142262
references.citation: J Genet Couns. 2005 Feb;14(1):55-69
references.pmid: 15789156
references.citation: Prenat Diagn. 2005 Aug;25(8):656-64
references.pmid: 16049990
references.citation: Int J Epidemiol. 2005 Apr;34(2):346-52
references.pmid: 15737971
references.citation: Patient Educ Couns. 2003 Jul;50(3):323-9
references.pmid: 12900106
references.citation: Prenat Diagn. 2004 Apr;24(4):265-75
references.pmid: 15065100
references.citation: Health Aff (Millwood). 2003 Jul-Dec;Suppl Web Exclusives:W3-614-7
references.pmid: 15506164
references.citation: Cult Med Psychiatry. 2001 Jun;25(2):195-223
references.pmid: 11453259
references.citation: J Genet Couns. 1999 Oct;8(5):255-74
references.pmid: 26142373
references.citation: Prenat Diagn. 2000 Jan;20(1):23-9
references.pmid: 10701846
references.citation: BMJ. 2002 Oct 26;325(7370):961-4
references.pmid: 12399352
references.citation: Health Expect. 2001 Jun;4(2):99-108
references.pmid: 11359540
references.citation: Nurs Inq. 2007 Mar;14(1):13-22
references.pmid: 17298604
references.citation: Prenat Diagn. 2007 Oct;27(10):938-50
references.pmid: 17597492
references.citation: Health Technol Assess. 2004 Aug;8(33):iii, ix-x, 1-109
references.pmid: 15298822