Limits to the scope of non-invasive prenatal testing (NIPT): an analysis of the international ethical framework for prenatal screening and an interview study with Dutch professionals

Kater-Kuipers, Adriana; Bunnik, Eline M.; Beaufort, Inez de; Galjaard, R. J. H.

doi:10.1186/s12884-018-2050-4

Cited by 40 publications

(54 citation statements)

References 51 publications

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“…Among the common ethical challenges, cost was cited as the crucial challenge for NIPT's clinical implementation. This is consistent with other studies, emphasizing a view of health care providers that the cost of NIPT creates disparities in access to the test [27]. A focus on cost is also congruent with the findings of other studies of women's views [10,28,29], including our own study of women and couples in Lebanon and Quebec [19].…”

Section: Discussionsupporting

confidence: 91%

Implementation challenges for an ethical introduction of noninvasive prenatal testing: a qualitative study of healthcare professionals’ views from Lebanon and Quebec

et al. 2020

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Background:The clinical introduction of non-invasive prenatal testing for fetal aneuploidies is currently transforming the landscape of prenatal screening in many countries. Since it is noninvasive, safe and allows the early detection of abnormalities, NIPT expanded rapidly and the test is currently commercially available in most of the world. As NIPT is being introduced globally, its clinical implementation should consider various challenges, including the role of the surrounding social and cultural contexts. We conducted a qualitative study with healthcare professionals in Lebanon and Quebec as case studies, to highlight the relevance of cultural contexts and to explore the concerns that should be taken into account for an ethical implementation of NIPT.Methods: We conducted semi-structured interviews with 20 healthcare professionals (HCPs), 10 from each country, practicing in the field of prenatal screening and follow up diagnostic testing, including obstetricians and gynecologists, nurses, medical geneticists and, genetic counselors. We aimed to 1) explore HCPs' perceptions and views regarding issues raised by NIPT and 2) to shed light on ways in which the introduction of the same technology (NIPT) in two different contexts (Lebanon and Quebec) raises common and different challenges that are influenced by the cultural norms and legal policies in place. Results:We identified challenges to the ethical implementation of NIPT. Some are common to both contexts, including financial/economic, social, and organizational/ educational challenges. Others are specific to each context. For example, challenges for Lebanon include abortion policy and financial profit, and in Quebec challenges include lobbying by Disability rights associations and geographical access to NIPT.Conclusions: Our findings highlight the need to consider specific issues related to various cultural contexts when developing frameworks that can guide an ethically sound implementation of NIPT. Further, they show that healthcare professional education and training remain paramount in order to provide NIPT counseling in a way that supports pregnant women and couples' choice.

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Section: Discussionsupporting

confidence: 91%

Implementation challenges for an ethical introduction of noninvasive prenatal testing: a qualitative study of healthcare professionals’ views from Lebanon and Quebec

et al. 2020

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“…Which experts should decide on the scope of NIPT should be determined by future research. Based on earlier research an expert panel in the Netherlands could include midwives, gynecologists, clinical geneticists, laboratory specialists, policy makers, and ethicists (de Jong et al, ; Kater‐Kuipers, Bunnik, de Beaufort, & Galjaard, ). Nevertheless, opinions of women on the scope of prenatal screening, as found in this study, are important inputs for the determination of the scope.…”

Section: Discussionmentioning

confidence: 99%

Implementing non‐invasive prenatal testing (NIPT) in the Netherlands: An interview study exploring opinions about and experiences with societal pressure, reimbursement, and an expanding scope

Bakkeren

Kater-Kuipers

Bunnik

et al. 2019

Journal of Genetic Counseling

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The noninvasive prenatal test (NIPT) as the first trimester prenatal screening (FTS) for trisomies 21, 18, and 13 is offered to all pregnant women in the Netherlands. NIPT using genome sequencing allows for an expansion of the scope of FTS and the introduction of NIPT gives rise to ethical and societal concerns about deliberated decision‐making, pressure to engage in screening, and possible lack of equal access due to the financial contribution (€175) to NIPT. We explored the opinions and experiences of pregnant women, who were offered FTS, about these concerns, and the possibility of a broadened scope. Nineteen pregnant women representing a diversity of backgrounds were interviewed using a semi‐structured interview guide. Eight women did not opt for prenatal screening while 11 did (NIPT = 4, combined test = 7). Women experienced a free choice to accept or decline prenatal screening, despite sometimes receiving advice from others. Prior to pretest counseling, some women had already deliberated about what an abnormal test result would mean to them. Others accepted or declined FTS without deliberation. The current Dutch policy of requiring a co‐payment was acceptable to some, who believed that it functioned as a threshold to think carefully about FTS. Others were concerned that a financial threshold would lead to unequal access to screening. Finally, pregnant women found it difficult to formulate opinions on the scope of FTS, because of lack of knowledge. Life expectancy, severity, and treatability were considered important criteria for the inclusion of a condition in NIPT.

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“…The introduction of NIPT raises ethical quandaries. Notably, there are discussions with regard to the appropriate scope of NIPT 12–14. Dutch laboratories are licensed to screen for trisomies 13, 18 and 21 only, although pregnant women can choose to have incidental findings reported as well.…”

Section: Introductionmentioning

confidence: 99%

Should pregnant women be charged for non-invasive prenatal screening? Implications for reproductive autonomy and equal access

et al. 2019

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The introduction of non-invasive prenatal testing (NIPT) in healthcare systems around the world offers an opportunity to reconsider funding policies for prenatal screening. In some countries with universal access healthcare systems, pregnant women and their partners are asked to (co)pay for NIPT. In this paper, we discuss two important rationales for charging women for NIPT: (1) to prevent increased uptake of NIPT and (2) to promote informed choice. First, given the aim of prenatal screening (reproductive autonomy), high or low uptake rates are not intrinsically desirable or undesirable. Using funding policies to negatively affect uptake, however, is at odds with the aim of screening. Furthermore, copayment disproportionally affects those of lower socioeconomic status, which conflicts with justice requirements and impedes equal access to prenatal screening. Second, we argue that although payment models may influence pregnant women’s choice behaviours and perceptions of the relevance of NIPT, the copayment requirement does not necessarily lead to better-informed choices. On the contrary, external (ie, financial) influences on women’s personal choices for or against prenatal screening should ideally be avoided. To improve informed decision-making, healthcare systems should instead invest in adequate non-directive, value-focused pretest counselling. This paper concludes that requiring (substantial) copayments for NIPT in universal access healthcare systems fails to promote reproductive autonomy and is unfair.

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Limits to the scope of non-invasive prenatal testing (NIPT): an analysis of the international ethical framework for prenatal screening and an interview study with Dutch professionals

Cited by 40 publications

References 51 publications

Implementation challenges for an ethical introduction of noninvasive prenatal testing: a qualitative study of healthcare professionals’ views from Lebanon and Quebec

Implementation challenges for an ethical introduction of noninvasive prenatal testing: a qualitative study of healthcare professionals’ views from Lebanon and Quebec

Implementing non‐invasive prenatal testing (NIPT) in the Netherlands: An interview study exploring opinions about and experiences with societal pressure, reimbursement, and an expanding scope

Should pregnant women be charged for non-invasive prenatal screening? Implications for reproductive autonomy and equal access

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