Undergoing prenatal screening for Down's syndrome: presentation of choice and information in Europe and Asia.

Full Abstract

To date, studies assessing whether the information given to people about screening tests facilitates informed choices have focussed mainly on the UK, US and Australia. The extent to which written information given in other countries facilitates informed choices is not known. The aim of this study is to describe the presentation of choice and information about Down's syndrome in written information about prenatal screening given to pregnant women in five European and two Asian countries. Leaflets were obtained from clinicians in UK, Netherlands, Spain, Italy, Czech Republic, China and India. Two analyses were conducted. First, all relevant text relating to the choice about undergoing screening was extracted and described. Second, each separate piece of information or statement about the condition being screened for was extracted and then coded as either positive, negative or neutral. Only Down's syndrome was included in the analysis since there was relatively little information about other conditions. There was a strong emphasis on choice and the need for discussion about prenatal screening tests in the leaflets from the UK and Netherlands. The leaflet from the UK gave most information about Down's syndrome and the smallest proportion of negative information. By contrast, the Chinese leaflet did not mention choice and gave the most negative information about Down's syndrome. Leaflets from the other countries were more variable. This variation may reflect cultural differences in attitudes to informed choice or a failure to facilitate informed choice in practice. More detailed studies are needed to explore this further.

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Author information

Author/s: Hall, Sue (S); Chitty, Lyn (L); Dormandy, Elizabeth (E); Hollywood, Amelia (A); Wildschut, Hajo I J (HI); Fortuny, Albert (A); Masturzo, Bianca (B); Santavý, Jiøí (J); Kabra, Madhulika (M); Ma, Runmei (R); Marteau, Theresa M (TM);

Affiliation: King's College London, Institute of Psychiatry, Department of Psychology at Guy's, Health Psychology Section, London, UK.

Journal and publication information

Publication Type: Comparative Study; Journal Article; Research Support, Non-U.S. Gov't

Journal: European journal of human genetics : EJHG (Eur J Hum Genet), published in England. (Language: eng)

Reference: 2007-May; vol 15 (issue 5) : pp 563-9

Dates: Created 2007/04/26; Completed 2007/06/19;

PMID: 17311082, status: MEDLINE (last retrieval date: 12/26/2008)

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MeSH headings (categories)

This article was linked to the MESH Headings shown below.

Adult
Asia
Down Syndrome - diagnosis
Europe
Female

Humans
Pamphlets
Pregnancy
Prenatal Diagnosis - psychology
Truth Disclosure

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