By Eline M. Bunnik & Adriana Kater-Kuipers.
Today, pregnant women can use non-invasive prenatal testing (NIPT) in the first trimester of their pregnancy to screen for chromosomal abnormalities. NIPT requires only a blood draw, is more reliable than previous screening modalities, and leads to fewer false positive results, thus saving women from unnecessary invasive follow-up testing. It is, however, more expensive.
In our country, the Netherlands, NIPT has been available to all pregnant women since 2017 in the context of an implementation study, in which women are asked to co-pay 175 euros for NIPT. All other Dutch screening programmes, including the 20-week ultrasound scan, are offered free of charge. In our healthcare system, the co-payment requirement is an anomaly. It may in part explain the low uptake rates of first-trimester screening in our country (around 40%), whereas almost all women take part in the 20-week ultrasound scan. Now, many women may be motivated to participate in the 20-week ultrasound scan also because it offers them the opportunity to see the baby or to learn the baby’s sex. Although the 20-week ultrasound is meant as a prenatal screening test for structural foetal abnormalities, to many pregnant women, it is also a fascinating experience.
We believe, however, that some pregnant women who might be interested in – or who might have an interest in – first-trimester screening, are not taking part because of financial considerations. For a forthcoming interview study, we have spoken with pregnant women of higher and lower socioeconomic status in various rural and urban areas of the Netherlands. It appears that financial considerations may have direct effects: some women may simply not be able to amass the 175 euros, or may have other priorities that may offset their interest in screening. We also think that there are indirect effects of the co-payment requirement: women may feel that first-trimester screening is not that relevant to them. After all, if NIPT were important, they may believe, it would be offered free of charge, just like other public health services.
Funding policies for NIPT are not neutral. They will influence women’s screening behaviours. If, for instance, healthcare systems offered NIPT completely free of charge, women might take part automatically, having no good reason not to, and without considering the offer. This would amount to routine uptake of first-trimester screening, which may be harmful to women (as they may enter upon screening ill-prepared for the difficult reproductive decisions that follow from abnormal test results) as well as society (as it may lead to mass uptake of NIPT, higher abortion rates, a loss of diversity in society, and increased discrimination and stigmatisation of people with disabilities). Elsewhere in Journal of Medical Ethics, we critically discuss ‘routinisation’ arguments in ethical discussions on NIPT, arguing that many of them lack ground. In this paper, we argue that funding policies should not be used to help prevent increased uptake of NIPT. For there is nothing intrinsically wrong with having more pregnant women participate in first-trimester screening, as long as their decisions regarding whether or not to participate are made voluntarily (and based on understanding). Healthcare systems should not strive towards either high or low uptake rates of screening. It is the quality of the decisions made by pregnant women, by which the success of prenatal screening programmes should be measured, not their uptake or their outcomes.
Also, it is thought, putting up a financial barrier may help to get women to stop and think. A 175 euro check will prompt them to consider the benefits and risks of NIPT and make an ‘informed choice’ for or against the screening offer. In our paper, we argue instead that a co-payment requirement may not contribute to informed choices. To the contrary, the choice whether or not to make use of NIPT becomes ‘informed’ largely by financial considerations. This is not consistent with the stated aim of prenatal screening programmes: to promote reproductive autonomy. To facilitate informed choice, women should instead be educated and counselled on the aim and possible implications of prenatal screening, and should make choices in accordance with their values and visions of parenthood and family life.
Also, we argue that the co-payment policy disproportionally affects pregnant women of lower socioeconomic status and leads to unequal access to first-trimester prenatal screening. This might imply that women who may have the greatest interest in prenatal screening (for whom taking care of a child with a chromosomal abnormality might be hardest, for lack of resources) are least likely to access it. NIPT should be accessible for all pregnant women, also – and may be especially – for those who are financially constrained.
In sum, women should not pay for NIPT – not in healthcare systems in which all other screening programmes are offered free of charge.
Author(s): Eline M. Bunnik,1 Adriana Kater-Kuipers,1 Robert-Jan H. Galjaard,2* Inez D. de Beaufort1*
Affiliations:
1 Department of Medical Ethics and Philosophy of Medicine, Erasmus MC, University Medical Centre Rotterdam, Rotterdam, The Netherlands
2 Department of Clinical Genetics, Erasmus MC, University Medical Centre Rotterdam, Rotterdam, The Netherlands
* Dr. Galjaard and prof.dr. Inez de Beaufort contributed equally
Competing interests: The authors declare that they have no competing interests.
Social media accounts of post author(s):
https://www.researchgate.net/profile/Eline_Bunnik
https://www.linkedin.com/in/eline-bunnik-b016b915/?originalSubdomain=nl
https://www.linkedin.com/in/adriana-kater-57b058115/
Link to https://jme.bmj.com/content/44/9/626.long