NON-INVASIVE PRENATAL TESTING: FACILITATING AUTONOMY OR COMPLICATING DECISION MAKING?

Purpose:

   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?

Method(s):

   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.

Result(s):

   In relation to (1):

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):

1. Any resulting choices should be real, meaningful and lawful and align to the purposes of any testing regime.

   In relation to (3):

1. Widening of NIPT may increase the availability of unclear/ uncertain information.
2. Therefore more information does not necessarily equate with better choices or decision making.
3. Parental decision making is likely to be complicated unless supported by targeted counselling before and after testing. 

   In relation to (4):

1. 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.

Conclusion(s):

   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.