Expanding scope of noninvasive prenatal testing

A prospective study in BMC Pregnancy and Childbirth that interviewed pregnant women and their partners on future potential uses of noninvasive prenatal testing (NIPT) found that 0% favored using the technology for non-medical sex selection and only 9% for determining non-medical traits.

In contrast, 97% approved NIPT for paternity testing, 55% for fetal whole genome sequencing (FWGS) to ascertain the child’s future risk of developing certain conditions at birth or during childhood, and 19% for FWGS to predict the child’s future risk of developing certain conditions during adulthood.

Hazar Haidar, PhD

The qualitative study was conducted between October 2014 and August 2015 in both Lebanon and Quebec, Canada, as case studies to explore the impact of cultural differences on these views.

A total of 43 individuals participated in the interviews: 7 Quebecois couples; 8 Quebecoise women; 6 Lebanese couples; and 9 Lebanese women.

The pregnant women were either at low or high risk of having a child with trisomy 21, the most common chromosomal anomaly in humans.

To ensure study feasibility and contain a homogeneous sample in both cultural contexts, only heterosexual couples were included.

The study found that participants from Lebanon (n = 21) and Quebec (n = 22) answered similarly for four of the five proposed NIPT usages. But for FWGS to test for adult-onset conditions, five in the Lebanon group approved, while only three in the Quebec group.

“Our results can further inform the debate on the future uses of NIPT and future policy of its implementation,” said co-principal investigator Hazar Haidar, PhD, a lecturer in bioethics at Université du Québec à Montréal (UQAM), Montréal, Canada.

Based on the authors’ previously published research, Haidar expected to find more differences between the two groups because of the diverse cultural, social and policy backgrounds of each setting. “We had also noticed in the past significant differences in the factors affecting pregnant women’s decision-making whether to accept or reject NIPT,” she said.

Another surprise finding was the mention of religious reasons by participants in Quebec for their disapproval of NIPT for non-medical sex selection and non-medical traits. “Unlike Lebanon, religion in Quebec is not integrated into every day and political life,” Haidar said.

A healthcare professional’s awareness of a couple’s cultural and social background, such as the importance the couple places on involving family members in these decisions and/or on the clinician’s recommendation, “might better prepare and equip the healthcare professional to help the couple in making a decision, and therefore to offer them culturally sensitive and patient-centered care,” Haidar said.

As NIPT technology evolves, the debate surrounding its expansion beyond chromosomal abnormalities is becoming more and more pressing, according to Haidar. “Therefore, it is crucial to consider developing professional guidelines on the future uses of NIPT to aid clinicians in better navigating the medical and ethical complexities raised by the technology,” she said.

Engaging key stakeholders, such as disability rights advocates, people living with disabilities, policymakers and prospective parents, is also key.

“Education, support, and counseling for pregnant women and prospective parents to ensure they are making an informed reproductive decision when choosing whether or not to accept NIPT for a specific condition, and one that is congruent with their own values and preferences, are essential as well,” Haidar said.

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Haidar reports no relevant financial disclosures.

Haidar H, Clerc-Blain JL, Vanstone M, et al. A qualitative study of women and partners from Lebanon and Quebec regarding an expanded scope of noninvasive prenatal testing. BMC Pregnancy Childbirth. 2021 Jan 13;21(1):54. doi:10.1186/s12884-020-03538-y