Literature DB >> 18655228

Informed choice to undergo prenatal screening for thalassemia: a description of written information given to pregnant women in Europe and beyond.

Ananda Van den Heuvel1, Amelia Hollywood, Julie Hogg, Elizabeth Dormandy, Lyn Chitty, Madhulika Kabra, Runmei Ma, Bianca Masturzo, Theresa M Marteau.   

Abstract

PURPOSE: To investigate whether prenatal screening for thalassemia is presented as a choice, and how the condition is described in written information given to pregnant women in different countries.
METHOD: One leaflet from each of seven countries (UK, The Netherlands, Greece, Italy, Israel, India and China) was collected for evaluation. Statements relating to choice and those describing the condition were extracted for analysis.
RESULTS: The leaflets varied in length from 26 to 74 sentences (mean: 42). Overall, more sentences were devoted to describing the condition (mean: 5) than to conveying choice (mean: 2). Leaflets from Northern Europe contained the highest proportion of sentences relating to choice, while those from Italy and Israel contained none. The majority of sentences describing thalassemia were classified as negative. The leaflets from China and India contained the highest proportion of negative sentences and the leaflets from the Netherlands and Italy, the lowest.
CONCLUSION: For women to make an informed decision they need to be offered a choice and given balanced information regarding the condition for which screening is being offered. The results of this study raise doubts as to the extent to which prenatal services in many countries are facilitating informed choices. Copyright (c) 2008 John Wiley & Sons, Ltd.

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Year:  2008        PMID: 18655228     DOI: 10.1002/pd.1995

Source DB:  PubMed          Journal:  Prenat Diagn        ISSN: 0197-3851            Impact factor:   3.050


  2 in total

1.  Ethical, social, and cultural issues related to clinical genetic testing and counseling in low- and middle-income countries: a systematic review.

Authors:  Adrina Zhong; Benedict Darren; Bethina Loiseau; Li Qun Betty He; Trillium Chang; Jessica Hill; Helen Dimaras
Journal:  Genet Med       Date:  2018-08-03       Impact factor: 8.822

2.  Social and cultural influences on genetic screening programme acceptability: A mixed-methods study of the views of adults, carriers, and family members living with thalassemia in the UK.

Authors:  Felicity K Boardman; Corinna Clark; Elsita Jungkurth; Philip J Young
Journal:  J Genet Couns       Date:  2020-03-01       Impact factor: 2.717

  2 in total

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