Testing Times Ahead: Non‐Invasive Prenatal Testing and the Kind of Community We Want to Be
| DOI | http://doi.org/10.1111/1468-2230.12355 |
| Date | 01 July 2018 |
| Published date | 01 July 2018 |
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LEGISLATION
Testing Times Ahead: Non-Invasive Prenatal Testing
and the Kind of Community We Want to Be
Roger Brownsword∗and Jeff Wale†
This article reviews the Nuffield Council on Bioethics’ report on Non-Invasive Prenatal Testing
(NIPT); and introduces two general questions provoked by the report – concerning, respec-
tively, the nature and extent of the informational interests that are to be recognised in today’s
‘information societies’ and the membership of today’s ‘genetic societies’. The article also con-
siders the role and nature of the Nuffield Council. While the Council’sreport identifies a range
of individual and collective interests that are relevant to determining the legitimate uses of
NIPT, we argue that it should put these interests into an order of importance; we sketch how
this might be done; and we suggest that, failing such a prioritisation of interests, the Council
should present its reflections in a way that engages public debate around a number of options
rather than making firm recommendations.
INTRODUCTION
About twenty years ago, it was discovered that placental cell free DNA can
be detected in the blood of pregnant women. Following this discovery, it
is now possible to use a simple blood test–so-called ‘non-invasive prenatal
testing’ (NIPT) – to ascertain, at a relatively early stage of a pregnancy, genetic
information about both the woman and the fetus. On the face of it, NIPT
represents a significant addition to the reproductive options that are available to
women (and their partners).1However, the question raised by the development
of NIPT is not whether it is legitimate for women to make their own(infor med)
reproductive choices, but whether – or which of – the choices now facilitated
by NIPT are ‘legitimate’ ones for women to have.2
In this article, our first and principal, purpose is to review the Nuffield
Council on Bioethics’ (NCOB’s) report on Non-Invasive Prenatal Testing:
∗King’sCollege London and Bour nemouth University;affiliate of the Nuffield Council on Bioethics
and one of the referees for the report on Non-Invasive Prenatal Testing: Ethical Issues; and member of
the UK National Screening Committee. The views expressed in this paper are purely personal and
should not be taken to represent or reflect the viewsof either the Council or the Committee. We are
grateful for the many helpful comments made by the referees. Needless to say, the usual disclaimer s
apply.
†Bournemouth University.
1 For the sake of economy, we will not keep repeating ‘and their partners’, but it should be taken
to be implicit.
2 The initial choice is whether or not to have the test, then whether or not to be informed as
to the results and then which of the post-result options (including further tests and deciding
whether or not to terminate the pregnancy) to take.
C2018The Author. The Modern Law Review C2018 The Modern Law Review Limited. (2018) 81(4) MLR 646–672
Published by John Wiley& Sons Ltd, 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA
Roger Brownsword and Jeff Wale
Ethical Issues3(the Report), a report that takes a relatively conservative position
in relation to the permissible uses of NIPT. Secondly, we introduce two more
general questions provoked by the Report, one concerning the nature and
extent of the informational interests that are to be recognised in today’s ‘infor-
mation societies’ and the other concerning the membership of today’s ‘genetic
societies’. Thirdly, at a time when the NCOB is undergoing a process of
‘renewal’, we ask what kind of bioethics body the Council is and aspires to be.
Our central criticism of the Report is that, while it lays out very clearly a
range of competing individual and collective interests that might bear on one’s
view as to which uses of NIPT are legitimate, it misses the opportunity to put
these interests into an order of importance that would explain and justify why
the Council takes the particular view that it does. In the light of this criticism,
we suggest that the Council should develop such an order of importance (and
we sketch how this might be done); or, failing that, we argue that the Council
should present its reflections in a way that engages public debate around a
number of options rather than making firm recommendations.
We start by sketching the context in which the NCOB has undertaken its
work on NIPT. Then we turn to the Repor t, focusing on its ethical framework,
its recommendations and its effective implementation. This leads to the two
more general questions prompted by the Report. Finally, we consider the
methodology and role of the NCOB. We suggest that at every level – for
pregnant women, for communities, for the NCOB and for regulators – there
are challenging times ahead.
THE CONTEXT FOR THE REPORT
Early in 2016, following a successful trial led by Professor Lyn Chitty at Great
Ormond Street Hospital,4the UK National Screening Committee announced
that it would recommend the cautious piloting of NIPT within the existing
screening programme for Down syndrome.5Stated simply, pregnant women
will be initially screened using the so-called combined test;6then, those who
are identified as being significantly at risk will be offered NIPT. While women
who have a negative NIPT result can avoid the more invasive tests for Down
syndrome (namely, amniocentesis or chorionic villus sampling), those women
with a positive NIPT result will be advised to have one of these tests. If
NIPT lives up to its promise, reducing the number of more invasive tests and,
3 Nuffield Council on Bioethics, Non-invasive prenatal testing: ethical issues (London, March 2017);
and, for a helpful background paper, see V. Ravitsky, ‘Non-Invasive Prenatal Testing (NIPT):
Identifying Key Clinical, Ethical, Social, Legal and Policy Issues’ at http://nuffieldbioethics.
org/wp-content/uploads/NIPT-background-paper-8-Nov-2015-FINAL.pdf (last accessed
27 April 2016).
4 http://www.rapid.nhs.uk/about-rapid/evaluation-study-nipt-for-down-syndrome/ (last acce-
ssed 12 April 2018).
5 See J. Gallagher,‘Safer Down’s test backed for NHS use’ at http://www.bbc.co.uk/news/health-
35311578 (last accessed 12 April 2018).
6 This test combines information from a serum screen with a measurement from an ultrasound
scan of the nuchal fold on the back of the neck of the fetus.
C2018The Author. The Modern Law Review C2018 The Modern Law Review Limited.
(2018) 81(4) MLR 646–672 647
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