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

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.