ANTENATAL THALASSAEMIA CARRIER TESTING: WOMEN’S PERCEPTIONS OF ‘INFORMATION’ AND ‘CONSENT’

Authors: Shenaz Ahmed, Josephine Green, Jenny Hewison

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