A Capabilities Approach to Prenatal Screening for Fetal Abnormalities

Abstract

International guidelines recommend that prenatal screening for fetal abnormalities should only be offered within a non-directive framework aimed at enabling women in making meaningful reproductive choices. Whilst this position is widely endorsed, developments in cell-free fetal DNA based Non-Invasive Prenatal Testing are now raising questions about its continued suitability for guiding screening policy and practice. This issue is most apparent within debates on the scope of the screening offer. Implied by the aim of enabling meaningful reproductive choices is the idea that screening services should support women in accessing prenatal tests that best enable them to realize the types of reproductive choice that they find important. However, beyond whatever options meet the quality standards required for facilitating an informed decision, the remaining criteria of facilitating autonomous choice is strictly non-directive. As a result, policy makers receive little indication prior to consultation with each individual woman, about what conditions should be prioritized during the offer of screening. In this paper we try to address this issue by using the capabilities approach to further specify the non-directive aim of enabling meaningful reproductive choice. The resulting framework is then used to assess the relative importance of offering prenatal screening where concerning different types of genetic condition. We conclude that greater priority may be ascribed to offering prenatal screening for conditions that more significantly diminish a woman's central capabilities. It follows that serious congenital and earlier-onset conditions are more likely to fulfill these criteria.

Respect voor (toekomstige) personen

“…Onze promovendus Greg Stapleton is bezig met de afronding van een proefschrift waarin deze vraagstelling nader wordt verkend, onder meer vanuit het humanistische perspectief van Martha Nussbaum's capabilities approach. [30] In een sociale context waarin het zorgen voor een kind met een ziekte of handicap gevolgen heeft voor de ouders en met name vrouwen in termen van maatschappelijke participatie, werk, inkomen en het kunnen realiseren van levensplannen, zijn met name die reproductieve keuzes zinvol die hen in staat stellen dergelijke uitkomsten voor zover mogelijk mee te bepalen in het licht van hun eigen waarden en idealen. Dan kom je uit bij een afbakening in termen van ernstige aangeboren of op de kinderleeftijd optredende aandoeningen.…”

Ethical Aspects of Prenatal DNA Testing

“…Furthermore, NIPT should be prohibited in cases that may lead to pregnancy termination on the basis of conditions that have limited, localized impairments (e. g., deafness or blindness), termination on the basis of adult-onset conditions (e. g., Huntington's disease), or termination on the basis of physical traits that do not impair functioning (e. g., attached ear lobes). A "free market" approach to cfDNA testing can lead to the triviali-zation of abortion if modern technologies are used to screen and terminate for non-medical traits under the justification of reproductive choice [1,13,53].…”

“…The aim of cfDNA screening is to provide reproductive autonomy through risk-free, easy, and early access to desired predictive genetic information, offering numerous benefits to women and their families [12]. International guidelines recommend that prenatal screening for fetal abnormalities should be offered only within a non-directive framework aimed at enabling women to make meaningful reproductive choices [13]. Prenatal screening is not exclusively aimed at offering women the opportunity to terminate an affected pregnancy.…”