NON-INVASIVE PRENATAL TESTING: FACILITATING AUTONOMY OR COMPLICATING DECISION MAKING?
The context of this presentation is the UK RAPID evaluation study on non-invasive prenatal testing (NIPT) for Downs’ syndrome and the future public funding of such a regime.
This research seeks to identify from the available literature:
(1) The aims and purposes of a publically funded NIPT regime?
(2) How those aims and purposes might be realised?
(3) How increased information about a possible future child might impact on the complexity of parental and clinical decision-making during a pregnancy?
(4) Whether further research is required before the scope of NIPT is widened?
Narrative Literature Review – this is critical narrative overview synthesizing the findings of relevant literature retrieved from searches of computer databases and authoritative texts.
Inclusion criteria: non-invasive prenatal testing and diagnosis.
Exclusion criteria: Invasive testing and ex-vivo embryo testing.
In relation to (1):
- Parental autonomy and public health rationales prevail. The former has an explicit role to play in the context of fetal anomaly and non-health related factors but public health considerations may still be relevant.
In relation to (2):
- Any resulting choices should be real, meaningful and lawful and align to the purposes of any testing regime.
In relation to (3):
- Widening of NIPT may increase the availability of unclear/ uncertain information.
- Therefore more information does not necessarily equate with better choices or decision making.
- Parental decision making is likely to be complicated unless supported by targeted counselling before and after testing.
In relation to (4):
- Further research is required to consider how additional genetic and non-health related information (of specific types) could be presented by clinicians to parents and how that process might be facilitated through counselling.
This presentation provides a framework for future research around NIPT and the particular issue of decision making. Further research is required if enhancing autonomy is a key priority for the State.
Limitations: This study provides a narrative overview of the literature and does not include new data from human participants.