Just choice: a Danielsian analysis of the aims and scope of prenatal screening for fetal abnormalities

Abstract

Developments in Non-Invasive Prenatal Testing (NIPT) and cell-free fetal DNA analysis raise the possibility that antenatal services may soon be able to support couples in non-invasively testing for, and diagnosing, an unprecedented range of genetic disorders and traits coded within their unborn child’s genome. Inevitably, this has prompted debate within the bioethics literature about what screening options should be offered to couples for the purpose of reproductive choice. In relation to this problem, the European Society of Human Genetics (ESHG) and American Society of Human Genetics (ASHG) tentatively recommend that any expansion of this type of screening, as facilitated by NIPT, should be limited to serious congenital and childhood disorders. In support of this recommendation, the ESHG and ASHG cite considerations of distribution justice. Notably, however, an account of justice in the organization and provision of this type of screening which might substantiate this recommendation has yet to be developed. This paper attempts to redress this oversight through an investigation of Norman Daniels’ theory of Just health: meeting health needs fairly. In line with this aim, the paper examines what special moral importance (for Just health) screening for the purpose of reproductive choice might have where concerning serious congenital and childhood disorders in particular. The paper concludes that screening for reproductive choice where concerning serious congenital and childhood disorders may be important for providing women with fair opportunity to protect their health (by either having or not having an affected child).

The ethics of preconception expanded carrier screening in patients seeking assisted reproduction

“…With restricted budgets, however, some ‘prioritization’ seems to be unavoidable. Still, in view of the importance of reproductive screening (at least partial) funding may be considered, in principle, insofar as such screening may help to prevent serious suffering, facilitates ‘just choices’ ( Stapleton et al , 2019 ) and meets relevant capabilities ( Nussbaum, 2011 ). Even though the primary aim of any reproductive genetic screening is not to reduce healthcare costs (see before), the fact that ECS may, in fact, save money in the long run that could be used to meet other healthcare needs, is a relevant factor to be taken into account in the calculus.…”

Why public funding for non-invasive prenatal testing (NIPT) might still be wrong: a response to Bunnik and colleagues

“…Munthe demanded a ‘drastic downscaling’ of prenatal testing in national health services ‘to target a much more narrowly selected range of particular severe conditions’ 6. Stapelton and colleagues demonstrated how a public funding of prenatal screening for severe congenital and childhood disorders could be important to protect the pregnant woman’s (mental) health during parenthood and would therefore be justifiable in accordance with Daniel’s theory of ‘Just health’ 7. The authors did not further specify which disorders would meet the claimed criteria.…”

“…The authors did not further specify which disorders would meet the claimed criteria. But they outlined the availability of parental support like paediatric care, specialist schooling or specified counselling as important factors which could help redressing health needs of parents of children with certain serious disorders and weaken entitlements to prenatal screening for these disorders 7. As a common motive, the current debate is increasingly questioning that there are indeed health goals which can be pursued by prenatal screening for Down syndrome and similar conditions.…”

A Capabilities Approach to Prenatal Screening for Fetal Abnormalities

“…This issue is perhaps best illustrated when considering how the utility of abortion in protecting health might be assessed using a traditional biomedical model of health as normal physiological functioning. A critical problem with using such models of health is that the teleological framework upon which traditional biomedical models of health are based incorporate normative criteria that conflict with one another whenever a woman's reproductive functions are taken into consideration [45]. For example, pregnancy and childbirth may all be viewed as perfectly normal physiological functions that are integral to a woman's reproductive health [2,8,45].…”

“…A critical problem with using such models of health is that the teleological framework upon which traditional biomedical models of health are based incorporate normative criteria that conflict with one another whenever a woman's reproductive functions are taken into consideration [45]. For example, pregnancy and childbirth may all be viewed as perfectly normal physiological functions that are integral to a woman's reproductive health [2,8,45]. Yet, they can also interrupt important physiological functions that are critical to protecting non-comparable aspects of their health.…”