‘Give us the full story’: Overcoming the challenges to achieving informed choice about fetal anomaly screening in Australian Aboriginal communities

Kayli Wild, Elaine Lawurrpa Maypilama, Sue Kildea, Jacqueline Boyle, Lesley Barclay, Alice Rumbold

This cross-cultural qualitative study examined the ethical, language and cultural complexities around offering fetal anomaly screening in Australian Aboriginal communities. There were five study sites across the Northern Territory (NT), including urban and remote Aboriginal communities. In-depth interviews were conducted between October 2009 and August 2010, and included 35 interviews with 59 health providers and 33 interviews with 62 Aboriginal women. The findings show that while many providers espoused the importance of achieving equity in access to fetal anomaly screening, their actions were inconsistent with this ideal. Providers reported they often modified their practice depending on the characteristics of their client, including their English skills, the perception of the woman's interest in the tests and assumptions based on their risk profile and cultural background. Health providers were unsure whether it was better to tailor information to the specific needs of their client or to provide the same level of information to all clients. Very few Aboriginal women were aware of fetal anomaly screening. The research revealed they did want to be offered screening and wanted the 'full story' about all aspects of the tests. The communication processes advocated by Aboriginal women to improve understanding about screening included community discussions led by elders and educators. These processes promote culturally defined ways of sharing information, rather than the individualised, biomedical approaches to information-giving in the clinical setting. A different and arguably more ethical approach to introducing fetal anomaly screening would be to initiate dialogue with appropriate groups of women in the community, particularly young women, build relationships and utilise Aboriginal health workers. This could accommodate individual choice and broader cultural values and allow women to discuss the moral and philosophical debates surrounding fetal anomaly screening prior to the clinical encounter and within their own cultural space.