Why information and choice won't solve all of NIPT's ethical problems

Abstract

Jane Fisher and Lyn Chitty highlight in BioNews 864 that it's been almost nine months since the UK National Screening Committee (NSC) recommended an 'evaluative implementation of NIPT into the NHS's antenatal screening programme (1) – a recommendation that still awaits ministerial decision. The NSC have recommended the staged implementation of NIPT as a contingent screen. It will be offered as an additional second-line test to women who have already had the currently available screening test and have been found to have a probability of greater than 1 in 150 of giving birth to a child with trisomy 13, 18 or 21. In the constraints of a publicly funded healthcare system, this step-wise implementation arguably makes ethical as well as scientific sense when compared to a model in which NIPT replaces current screening. It may reduce concerns such as routinisation of screening, the possible loss of moral and temporal 'thinking space' (2), and population harm resulting from overdiagnosis in pregnant women (see BioNews 797). Further, the oversight of testing by a public health body may mitigate the issue of equity of access to testing while accurately presenting the test's positive predictive value. While data now supports the use of NIPT in women from a range of risk backgrounds, it remains an 'advanced screening test' and is not yet diagnostic (3). This pragmatic and measured approach to the introduction of NIPT into a publicly funded healthcare setting is laudable, but ethical issues inevitably remain. Two particular aspects of the implementation of NIPT require further deliberation: (i) the ongoing prevalence of information-driven conceptions of reproductive autonomy; and (ii) the need to include a richer and more nuanced account of disability. I'll consider each in turn.