Initial psychometric analysis of novel instruments to assess decisional distress and decisional uncertainty in women who have considered using preimplantation genetic testing

Abstract

Objective To analyze psychometric properties of two novel instruments assessing decisional distress and uncertainty experienced by individuals considering preimplantation genetic testing (PGT). Methods The new PGT Decisional Distress instrument (22 items) assesses negative/positive emotions. The new PGT Decisional Uncertainty instrument assesses Clarity about test benefits/disadvantages (5 items) and Certainty of having adequate information/support to make a good decision (7 items). Scales ranged from 0 to 4. Psychometrics (central tendencies, internal consistency reliability, and discriminant validity) were evaluated. Stratified analysis by decision stage was conducted. All participants had considered or used PGT in the previous 6 months. Results N = 106 females (mean age 36.5 ± 4.8 years; 16% non‐Caucasian; 9% Hispanic) across 16 US states completed an online anonymous questionnaire. On average, respondents reported minimal distress (mean 0.96), high clarity (mean 3.26), and high certainty (mean 3.06), particularly those who had already decided compared to undecided women (P ≤ .02). Instruments had excellent internal consistency (Cronbach's α's 0.92‐0.94) and displayed sufficient inter‐individual variability (SD's 0.75‐0.89). Correlations confirmed expected patterns of association between instruments (P's < .01), indicating discriminant validity. Conclusion We document initial reliability and validity of new instruments to measure emotional distress and uncertainty in female patients who have recently considered PGT for single‐gene or chromosomal disorders.

Ethical and moral perspectives of individuals who considered/used preimplantation (embryo) genetic testing

“…Electing to bring a child into the world and the experience of pregnancy and childbearing are among the most consequential events in a person's life. Thus, it is not surprising that the process involved in deciding whether to use genetic testing on an embryo (PGT) (Dekeuwer & Bateman, 2013; Dommering et al., 2012; Genoff Garzon et al., 2018; Ormondroyd et al., 2012; Pastore et al., 2020; Rubin et al., 2018) or targeted carrier testing as a potential parent (Pastore et al., 2014; Walker, Clark et al., 2017) is a highly complicated one, involving a number of personal and ethical considerations. Although research is beginning to explore patients’ ethical considerations in PGT, currently, there are no tools available to facilitate the systematic collection of data regarding patients’ ethical considerations in PGT across a variety of genetic conditions.…”