Dr Hilary Bowman-Smart1,2, Dr Molly Johnston2
1Ethox Centre, University of Oxford, 2Monash Bioethics Centre, Monash University
Counselling prior to non-invasive prenatal testing (NIPT) is recommended to promote informed decision-making and reduce the risks of routinisation. NIPT providers produce a range of information materials that can play a role in the provision of pre-test counselling. However, the extent to which these materials support informed decision-making is unclear.
To begin to assess the role and function that various information materials can play in pre-test counselling, we analysed NIPT request forms from NIPT brands available in Australia. We used the Evaluative Linguistic Framework to assess the content and the quality of the written information in commonly used request forms. Principal elements assessed included: overall generic structure and function, reader-writer relationship, factual content, and accessibility. Nine forms from different NIPT brands were included in the analysis.
Our analysis revealed that there is significant ambiguity in the function of the forms. Although the majority of them (7/9) were either explicitly or implicitly presented as ‘consent’ forms, the layout and/or content of the forms suggested the documents primarily performed other functions (e.g. pathology request). There was considerable variation between the forms in terms of content and who the intended ‘reader’ was, suggesting that patient-provider interaction with the form is determined by which brand of NIPT is being considered.
This study provides insight into the content and function of NIPT request forms and contributes to the assessment of pre-test information provision for NIPT in Australia. Future ethnographic research is needed to determine how the forms are used in practice.
Biography:
Molly Johnston is an assistant lecturer at the Monash Bioethics Centre. Molly has a background in reproductive science but her current research falls within the intersection between social science, bioethics, and regulation. Her research interests are the ethical and social issues raised by human reproductive technologies, in particular, ARTs and prenatal genetic testing.