Abstract
Non-medical sex selection (NMSS) is the practice of using medical techniques to choose the sex of offspring for social, economical, cultural, and/or personal reasons, a practice that raises complex ethical, social, and legal issues. With the expansion of non-invasive prenatal testing (NIPT), making fetal sex determination safer and possible earlier in a pregnancy, prenatal genetic counselors (GCs) are more likely to encounter patients who intend to use NIPT for NMSS in the future. Although there is evidence in the literature that GCs are already encountering these situations, their experience of counseling these patients is not known. In this qualitative study, we used an anonymous online survey consisting of seven open-ended questions to learn about GCs’ experiences of counseling patients who intended to use NIPT towards NMSS. Participants were asked to describe a case where their patient wanted to use NIPT for NMSS, and then to discuss how they counseled the patient, the factors that influenced their decision on how to counsel the patient, and how this encounter affected them on a personal and professional level. Three themes emerged from the 12 participants’ responses: (1) Ethical principles; (2) Cognitive dissonance and emotional distress; and (3) Empathy. Despite varying levels of discomfort with handling these cases, all participants provided their patients with the means to learn the sex of their fetus based on one or more ethical principles. Many participants reported experiencing conflict of values and emotional distress from these encounters, and they used reflection and processing as coping strategies which resulted in increased confidence in handling similar cases in the future. Findings from this study may be helpful in training prospective genetic counselors and providing guidance for practicing prenatal counselors. More research is needed to fully understand the complex decision making process and cognitive dissonance genetic counselors experience when counseling patients for this indication and the frequency of these encounters.
Keywords: Non-invasive prenatal testing (NIPT), non-medical sex selection, prenatal genetic counseling, cognitive dissonance, decision making process, emotional distress, ethical principles