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

Abstract

Background: Advanced prenatal genomic technologies can identify risks for adultonset (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.

Women's attitudes towards disclosure of genetic information in pregnancy with varying levels of penetrance

“…The study is a part of extended research that included women hospitalized after delivery (24–72 h) in the maternity wards of Hadassah Medical Center and Rabin Medical Center between May 2017 and April 2019, as previously described 29 . These two centers, covering different geographical areas in Israel, were selected because the populations giving birth there represent women of childbearing age from diverse socioeconomic, ethnic and cultural backgrounds.…”

“…Consenting participants were anonymously interviewed using a 15‐min computer‐assisted structured questionnaire. The multiple‐choice questionnaire (please see the translated questionnaire in Appendix 1) was constructed and validated by the research team, 29 which included experts in medical genetics, epidemiology, and sociology. Relevant to this report, data were collected on the respondent's characteristics, and on their interest in receiving various types of genetic findings about their fetuses, including Autism‐spectrum‐disorders (ASD) with full penetrance, as well as SL for ASD with three different penetrance levels: ≤10%, ≥20% and ≥40%.…”

“…The scale was then dichotomized by merging values 1 and 2 (i.e., reflecting agreement) and values 4 and 5 (i.e., reflecting disagreement). The few women (less than 3%) who were undecided were excluded from the analyses, as done in other similar studies including ours 29–31 …”

“…The few women (less than 3%) who were undecided were excluded from the analyses, as done in other similar studies including ours. [29][30][31] Women's attitudes toward disclosure of ASD with less than full penetrance were evaluated separately for all three penetrance levels (≤10%, ≥20% or ≥40%) using a three-point scale: 1-in favor of disclosure, 2 -against disclosure, and 3-no opinion regarding disclosure.…”

“…This is in line with our previous results showing that higher concern for fetal health, academic education and lower religious observance yielded increased support in the disclosure of severe congenital and actionable adult-onset findings in pregnancy. 29 The varied responses of the study participants highlight the potential disadvantages of each of the currently practiced disclosure policies of SL in pregnancy. If full disclosure is practiced, women who are not interested in receiving information with incomplete penetrance (in our sample -about 23% not interested in 40% penetrance, 34.4% in 20%, and nearly 45% in 10%) are forced to receive such information or refrain from testing altogether.…”