Abstract

Non-invasive prenatal screening (NIPS) is being increasingly used by expectant parents. Much provision of this test in Australia is occurring in clinical settings where specialised genetic counselling is unavailable. Potential psychosocial consequences of NIPS remain largely unexplored. This study aimed to understand potential psychosocial consequences from prenatal genetic screening tests. We conducted a thematic analysis of semi-structured qualitative interviews with 16 women who received an increased-chance prenatal screening (NIPS, combined first trimester screening, or morphology scan) result. All participants had NIPS as a first line screening test (n=12) or contingent screening test after receiving an increased chance results from another screening test (n=4). Women held positive opinions of NIPS and discussed the need for it to be covered by Medicare. However, some received inadequate pre-test counselling which potentially contributed to negative psychosocial consequences, including increased self-reported anxiety and distress. Several women were unaware of the conditions that NIPS screened for, particularly SCA and microdeletions and were subsequently surprised when they received increased-chance results. False positive results caused some women to feel that bonding with their baby had been significantly disrupted in the period between receiving an increased chance screening result and receiving their contingent NIPS and/or diagnostic testing results. Women discussed several strategies that would have made their experience receiving an increased-chance screening result easier, including better information provision about the conditions tested for, and the possible consequences of an increased-chance screening result, particularly for conditions beyond the three common trisomies. Our results indicate that some expectant parents are not fully informed of the scope and implications of NIPS prior to testing. This may prevent them from making fully considered choices that reflect their personal values and aspirations for parenthood. Better pre-test counselling may facilitate informed decision-making and improve prospective parents’ experiences.

Full Text
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