Dr Phillipa Brice's accompanying commentary highlights how non-invasive
testing of free fetal DNA (ffDNA) in pregnancy could transform women's
experiences of antenatal screening and prenatal diagnosis. NIPD is
already available for foetal sex, rhesus D blood type and some
Mendelian conditions such as achondroplasia, with tests for aneuploidy
detection and Down syndrome being developed. These tests will not pose
a risk to the pregnancy and could provide women and couples with
definitive information earlier than current methods. The advantages
over 'traditional' prenatal screening and diagnosis seem obvious - so
is NIPD ethically problematic?
Unsurprisingly, a pithy 'yes'
or 'no' answer to this question is impossible and would undermine the
opportunity for a rich and important discussion of how the ethics of
NIPD might depart from 'traditional' testing in pregnancy. But in
short, expectations are that NIPD can be conducted ethically if the
right conditions are in place, and it is laudable that those working in
this field are liaising so closely with ethicists to address emerging
concerns as this technology develops.[1]
An initial question is whether this technology gives rise to any new
ethical questions over and above existing screening, diagnostic or
assisted reproductive technologies. Existing debates in prenatal
diagnosis, such as the disability rights critique, will continue to be
relevant and may be exacerbated. So too will issues of the
'seriousness' threshold for offering PND and the routinisation of
testing. Whilst NIPD does not depart too far from these existing
issues, there may be important changes to the moral landscape of
testing.
If offered widely (for suitable conditions), NIPD will effectively
become a screening test with a definitive outcome, akin to HIV testing
in pregnant women, but one that may lead to termination. We need to
decide which method of consent is appropriate and be mindful that a
major justification for declining prenatal diagnosis (risk to the
pregnancy) will be removed. Overall termination rates may also
increase. Women will need sound and unbiased information about NIPD and
will require time to reflect before deciding about testing.
Women are generally expected to enter into prenatal testing as fully
consenting individuals. While at face value this may seem an obvious
condition for ethical conduct, achieving informed consent or following
an informed choice may not be as straightforward as it first appears.
This may be especially true in the context of NIPD. Research shows that
there are different attitudes between cultures as to whether women,
couples or health professionals should make decisions about prenatal
testing[2]. This arguably calls into question the emphasis on respect
for individual autonomy so common in Northern European nations. Our
research is asking whether autonomous decision-making for NIPD might
better be understood in a feminist (relational) way, recognising social
relationships as a fundamental part of what it is for an individual to
make an autonomous decision.
NIPD could also be used for non-medical ends, such as sex
determination and paternity testing. Indeed, internet-based providers
of both are already available. Whilst a full exploration of these
issues is not possible here, such applications should be monitored. For
example, one major concern is that sex determination may be used to
reinforce stereotyped gender expectations or sex discrimination.
Prenatal paternity testing to inform the interested parties may be
acceptable, but procuring this test to terminate if the 'wrong'
biological father is discovered is more challenging.
These concerns mean that procedures and regulation for NIPD should
be considered. Prenatal diagnosis currently involves clinical services
as gatekeepers but NIPD will only require a blood test - should this be
regulated by the market or more formally? Any new guidelines should be
consistent with current practice and should not unduly restrict
professional autonomy.
Ethical analysis of NIPD should go hand in hand with economic and
clinical evaluations, not to mention empirical research with pregnant
women, couples and health professionals. This multi-disciplinary
approach will help address important questions such as educational and
informational needs, and psycho-social indications. We are currently
working with the SAFE Network [3] and the Public Health Genetics
Foundation to deliberate ethical issues. NIPD is certainly not without
ethical pitfalls, but early identification and deliberation will ensure
a constructive role for NIPD to facilitate pregnant women to make well
informed decisions in pregnancy, with good informational support.









