Noninvasive Prenatal Testing: A Survey of Young (Future) Parents in Flanders

Borry, Pascal; Favaretto, Maddalena; Batthyany, Ann; Boey, Eline; Tongerloo, Sophie Van; Dooms, Marc; Huys, Isabelle

doi:10.2217/pme-2017-0065

Cited by 5 publications

(5 citation statements)

References 25 publications

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“…They were interested in FWGS for diseases that develop shortly after birth or during childhood and that are preventable or treatable. Our findings resonate with those from other studies showing that participants were favorable towards testing for childhood-onset conditions, whether or not performed through FWGS [21,[34][35][36].…”

Section: Discussionsupporting

confidence: 91%

A qualitative study of women and partners from Lebanon and Quebec regarding an expanded scope of noninvasive prenatal testing

Haidar

Clerc-Blain

Vanstone

et al. 2021

BMC Pregnancy Childbirth

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Background In the near future, developments in non-invasive prenatal testing (NIPT) may offer couples the opportunity to expand the range of genetic conditions tested with this technology. This possibility raises a host of ethical and social concerns, such as the type of information (medical vs. non-medical information) that couples might be exposed to and how this might complicate their informed decision-making. Currently, only limited research, mainly carried out in western countries, was conducted on women’s and partners’ views regarding the potential expansion of NIPT. Methods This study used semi-structured interviews with pregnant women and their partners to explore their views on future potential NIPT applications such as non-medical sex selection and non-medical traits, paternity testing, and NIPT use for fetal whole genome sequencing (FWGS). It was conducted in Lebanon and Quebec, as case studies to explore the impact of cultural differences on these views. Results We found no differences and many similarities when comparing the perceptions of participants in both contexts. While couples in both settings disapproved of the use of NIPT for non-medical sex selection and non-medical traits such as physical characteristics, they were near-unanimous about their support for its use for paternity testing in specific cases, such as legal doubts or conflicts related to the identity of the father. Participants were more ambivalent about NIPT for Fetal Whole Genome Sequencing. They supported this use to detect conditions that would express at birth or early childhood, while objecting to testing for adult-onset conditions. Conclusions These results can further inform the debate on the future uses of NIPT and future policy related its implementation.

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Section: Discussionsupporting

confidence: 91%

A qualitative study of women and partners from Lebanon and Quebec regarding an expanded scope of noninvasive prenatal testing

Haidar

Clerc-Blain

Vanstone

et al. 2021

BMC Pregnancy Childbirth

View full text Add to dashboard Cite

show abstract

“…Our survey findings related to support for NIPT for both preventable and non-preventable AOCs differ from other studies, which have generally shown lower parental support for NIPT for AOCs 30–33. This finding might suggest that this sample places significant value in reproductive autonomy and recognises the benefits that this testing could yield for parents and the family unit.…”

Section: Discussioncontrasting

confidence: 99%

Unconditional access to non-invasive prenatal testing (NIPT) for adult-onset conditions: a defence

2023

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Over the past decade, non-invasive prenatal testing (NIPT) has been adopted into routine obstetric care to screen for fetal sex, trisomies 21, 18 and 13, sex chromosome aneuploidies and fetal sex determination. It is predicted that the scope of NIPT will be expanded in the future, including screening for adult-onset conditions (AOCs). Some ethicists have proposed that using NIPT to detect severe autosomal AOCs that cannot be prevented or treated, such as Huntington’s disease, should only be offered to prospective parents who intend to terminate a pregnancy in the case of a positive result. We refer to this as the ‘conditional access model’ (CAM) for NIPT. We argue against CAM for NIPT to screen for Huntington’s disease or any other AOC. Next, we present results from a study we conducted in Australia that explored NIPT users’ attitudes regarding CAM in the context of NIPT for AOCs. We found that, despite overall support for NIPT for AOCs, most participants were not in favour of CAM for both preventable and non-preventable AOCs. Our findings are discussed in relation to our initial theoretical ethical theory and with other comparable empirical studies. We conclude that an ‘unconditional access model’ (UAM), which provides unrestricted access to NIPT for AOCs, is a morally preferable alternative that avoids both CAM’s fundamental practical limitations and the limitations it places on parents’ reproductive autonomy.

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“…Regarding attitudes toward NIPT, most women who participated were in favour of NIPT, as recorded in previous studies, 9,10,12,13,15 and thought that it should be available to all women of advanced maternal age in view of the heightened risk of having a child with Down syndrome. Some women also stated that it should be offered to all women regardless of age.…”

Section: Discussionmentioning

confidence: 88%

“…[6][7][8] Because NIPT is an emerging screening method, the attitudes of women and families have been studied across several countries. [9][10][11][12][13][14][15][16] Women have been generally favourable of NIPT across different countries-51% in the Netherlands, 13 74% in Sweden, 9 and 88% in the United Kingdom 15 -even if they had not heard of the test before. 9 Women thought that the most important attribute of NIPT was the safety of the foetus.…”

Section: Introductionmentioning

confidence: 99%

Knowledge and attitudes regarding non‐invasive prenatal testing among women in Saudi Arabia

et al. 2021

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Objectives To explore women's knowledge and attitudes regarding NIPT, its implications, the factors affecting their decision to undergo the test and actions taken following a positive result. Methods In this descriptive study, women who were offered NIPT through the foetal maternal clinic, were asked to complete an anonymous questionnaire about NIPT. The questionnaire consisted of 29 statements and covered four areas: demographics, knowledge, attitudes and decision‐making. Results A total of 150 women who were offered NIPT participated in this study. The results showed that generally women had poor knowledge of critical aspects of NIPT. This included the conditions tested for, the implications of the test and its limitations. Over 90% of women were in favour of NIPT and it being offered to all women of advanced maternal age while 66% of the tested women agreed to having confirmatory invasive testing in the case of a positive result. Conclusion This study shows that the acceptance rate for NIPT is high despite incomplete understanding of the benefits and limitations of the test. The study findings support the need for education regarding this test through dedicated genetic counselling sessions in order to ensure that an informed decision can be made.

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Noninvasive Prenatal Testing: A Survey of Young (Future) Parents in Flanders

Abstract: The participants agreed nearly unanimously that NIPT must be offered to pregnant women with an increased risk of having a child with a genetic disorder, but they were also positive about extending NIPT screening to all pregnant women.

Cited by 5 publications

References 25 publications

A qualitative study of women and partners from Lebanon and Quebec regarding an expanded scope of noninvasive prenatal testing

A qualitative study of women and partners from Lebanon and Quebec regarding an expanded scope of noninvasive prenatal testing

Unconditional access to non-invasive prenatal testing (NIPT) for adult-onset conditions: a defence

Knowledge and attitudes regarding non‐invasive prenatal testing among women in Saudi Arabia

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