Screening Human Life - The Legal and Ethical Implications of Non-invasive Prenatal Testing.

Abstract

We now have easy and low risk tests that can be undertaken at an early stage of pregnancy that can yield a range of information about the future child. This technology is known as non-invasive prenatal testing (NIPT) and can provide parents with accurate information about the health or disability of the developing child, but also has the potential to yield uncertain and trivial data, or information that has no immediate clinical purpose. The scientific potential to screen the whole human genome has already been demonstrated and NIPT may be commercially viable for this purpose shortly. NIPT has developed a clear narrative around the facilitation and enhancement of parental autonomy – that testing positively impacts on reproductive choice by providing information, enabling preparation or informed choices about the continuation or termination of the pregnancy. Testing may also be based on sound public health considerations where it can enable or facilitate remedial measures aimed at improving the health of the developing child. However, discriminatory and eugenic concerns mean that public health arguments are rarely articulated openly in relation to anomaly or non-health testing. With an expanding human population, dwindling natural resources and an upsurge in ‘rights based ethics’, we may see these conventional narratives put under increasing pressure. The simplicity of these tests, their global availability and the potential for normalisation, create the opportunity for a societal shift that should not be ignored during implementation. If parents perceive a benefit in knowing information, and commercial providers see the demand and potential for profit from these tests, it will be difficult to hold back the tide once the door has been opened by society. Discriminate availability and the scope for societal factors to influence parental decision-making are risks that should not be ignored by society. This paper explores the regulatory and ethical risks associated with these tests, and offers some possible responses that may be of relevance to policy makers prior to wider global implementation of the technology.