Antenatal thalassaemia carrier testing: women's perceptions of 'information' and 'consent'

Abstract

Objectives: To explore the attitudes of a sample of pregnant women in the UK towards informed consent for antenatal thalassaemia carrier testing and perceived pre-test information needs for such testing. Setting: The study was conducted in two cities in the North of England, where participants were recruited via Midwifery and Genetic services. Method: In all, 110 Pakistani women tested and not found to be thalassaemia carriers completed a questionnaire, 14 of whom were also interviewed. Thirty-six women identified as carriers or possible carriers completed a questionnaire and were interviewed. The questionnaires assessed whether women were aware that they had been tested for thalassaemia carrier status, whether they were asked for their consent for such testing, and their pre-test information preferences. The interviews explored women's beliefs about 'informed consent' in more depth. Results: Women had received little or no pre-test information and said that they would have preferred to be informed that they were being tested, but they did not expect, or express a desire, to be asked for their informed consent. Conclusion: While information was important to women, consenting was not. Overall, women discussed 'information' and 'consent' as two separate issues, thus challenging assumptions around the term informed consent. Women wanted pre-test information because they wanted to know more about the tests that they would be having, not to use it to make decisions about whether to have the tests.