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. 2022 Jul;42(8):1038-1048.
doi: 10.1002/pd.6162. Epub 2022 May 4.

Postpartum women's attitudes to disclosure of adult-onset conditions in pregnancy

Vitalia Libman  1 , Michal Macarov  2 , Yechiel Friedlander  1 , Sidra Goldman-Mellor  3 , Salomon Israel  4 , Drorith Hochner-Celnikier  5 , Yishai Sompolinsky  5 , Uri Pinchas Dior  5 , Michael Osovsky  6 , Lina Basel-Salmon  7   8   9   10 , Arnon Wiznitzer  10   11 , Yehuda Neumark  1 , Vardiella Meiner  2 , Ayala Frumkin  2 , Shiri Shkedi-Rafid  2 , Hagit Hochner  1
Affiliations

Postpartum women's attitudes to disclosure of adult-onset conditions in pregnancy

Vitalia Libman et al. Prenat Diagn. 2022 Jul.

Abstract

Background: Advanced prenatal genomic technologies can identify risks for adult-onset (AO) conditions in the fetus, challenging the traditional purpose of prenatal testing. Professional guidelines commonly support disclosure of high-penetrance AO actionable conditions, yet attitudes of women/parents to these findings and factors affecting their attitudes are understudied.

Methods: We explored 941 (77% response rate) postpartum women's attitudes towards receiving prenatal genetic information, and associations of sociodemographic, medical and psychological characteristics with their choices, focusing on AO conditions.

Results: Women largely support the disclosure of actionable AO findings (58.4%), in line with professional guidelines. A third of the women also supported the disclosure of non-actionable AO conditions. Stronger religious observance (p < 0.001) and higher psychological distress (p = 0.024) were associated with decreased interest in receiving actionable AO conditions, whereas higher concern for fetal health yielded increased interest (p = 0.032). Attitudes towards disclosure were strongly associated with women's perceived benefit of such information for their own, partner's, and future child's health. Termination of pregnancy based on such information received very little support.

Conclusion: In-light of the demonstrated understanding of nuanced genetic information and the observed diversity in attitudes, a culturally competent opt-in/out policy could be considered. If full-disclosure is practiced, support should be provided to those expressing higher levels of distress.

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Conflict of interest statement

The authors declare no conflict of interest, financial or otherwise, in the writing of this manuscript.

Figures

FIGURE 1
FIGURE 1
Women's agreement with disclosure of various types of genetic information in pregnancy. Level of agreement was measured using a five‐level Likert scale. Values 1 and 2 were merged to reflect agreement, value 3 reflects no opinion, and values 4 and 5 were merged to reflect disagreement
FIGURE 2
FIGURE 2
Women's agreement with disclosure of various type of genetic information in pregnancy, by level of religiosity. Percent agreement reflects proportion of women who responded one or two in the five‐level Likert scale. Bars represent agreement with disclosure of severe congenital disease (dark grey) and adult‐onset actionable (light grey) or non‐actionable (grey) conditions within each of the four religiosity categories (secular, traditional, orthodox and ultraorthodox)
FIGURE 3
FIGURE 3
Women's agreement with statements in favor or against disclosure of genetic information about adult‐onset conditions in pregnancy, by attitudes towards disclosure. Women's percent agreement with statements proposing reasons for or against disclosure of information about actionable (Panel A) or non‐actionable (Panel B) adult‐onset (AO) conditions. Responses were evaluated separately for supporters (dark grey bars) and objectors (light grey bars) of disclosure. Figures in parentheses correspond to the figures provided in Figure 1
See this image and copyright information in PMC

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