Non-Invasive Prenatal Testing for “Non-Medical” Traits: Ensuring Consistency in Ethical Decision-Making

Abstract

The scope of non-invasive prenatal testing (NIPT) could expand in the future to include detailed analysis of the fetal genome. This will allow for the testing for virtually any trait with a genetic contribution, including 'non-medical' traits. Here we discuss the potential use of NIPT for these traits. We outline a scenario which highlights possible inconsistencies with ethical decision-making. We then discuss the case against permitting these uses. The objections include practical problems; increasing inequities; increasing the burden of choice; negative impacts on the child, family, and society; and issues with implementation. We then outline the case for permitting the use of NIPT for these traits. These include arguments for reproductive liberty and autonomy; questioning the labelling of traits as 'non-medical'; and the principle of procreative beneficence. This summary of the case for and against can serve as a basis for the development of a consistent and coherent ethical framework.

Understanding knowledge, perception, and willingness of non-invasive prenatal testing for fetal aneuploidy: a survey among Chinese high-risk pregnant women

“…Despite its high accuracy, it is vital to acknowledge that NIPT is not a flawless technology. Inherent limitations and challenges persist, necessitating concomitant usage with other testing methodologies and clinical assessments for a holistic determination of fetal health ( 2 , 36–38 ). Notably, NIPT hinges on free placental DNA and not – as certain literature posits – on “cell-free fetal DNA (cffDNA)” ( 2 ).…”

Ethical issues associated with prenatal screening using non‐invasive prenatal testing for sex chromosome aneuploidy

“…The principle of reproductive autonomy has been widely discussed in relation to NIPT and may justify claims to a right of prospective parents to screen for foetal SCAs. 45,60,61 Prenatal screening, including for SCAs, increases the reproductive options available to prospective parents, including but not limited to the decision of whether to continue or terminate a pregnancy. The moral primacy of reproductive autonomy in prenatal care helps to establish a right of prospective parents to information about their foetus and pregnancy where the technology is available to provide that information.…”

“…45 Consequently, some scholars argue that it is not unreasonable that the information and choices made available to parents may be limited if screening would result in significant harms, including moral harms, such as undermining autonomy. 60,66 These concerns, however, may be allayed by considering how and when information is provided to NIPT users and ensuring this is done in a way that supports rather than undermines autonomy. We discuss this point further in what follows.…”

“…The principle of reproductive autonomy has been widely discussed in relation to NIPT and may justify claims to a right of prospective parents to screen for foetal SCAs 45,60,61 . Prenatal screening, including for SCAs, increases the reproductive options available to prospective parents, including but not limited to the decision of whether to continue or terminate a pregnancy.…”

“…Another version, made more specifically in relation to SCAs, is that there may be insufficient information available about SCA phenotypes to support parents to make an autonomous choice 45 . Consequently, some scholars argue that it is not unreasonable that the information and choices made available to parents may be limited if screening would result in significant harms, including moral harms, such as undermining autonomy 60,66 . These concerns, however, may be allayed by considering how and when information is provided to NIPT users and ensuring this is done in a way that supports rather than undermines autonomy.…”