Author ORCID Identifier
0000-0002-2205-5788
Date of Graduation
5-2022
Document Type
Thesis (MS)
Program Affiliation
Genetic Counseling
Degree Name
Masters of Science (MS)
Advisor/Committee Chair
Meagan Choates
Committee Member
Blair Stevens
Committee Member
Syed Hashmi
Committee Member
Shannon Mulligan
Committee Member
Rebecca Lunstroth
Abstract
Non-Invasive Prenatal Screening (NIPS) provides a risk assessment for aneuploidies by utilizing cell-free DNA (cfDNA). Recently, it was recommended that NIPS be offered to all pregnant people regardless of a priori risk for aneuploidy. In the absence of an increased risk, alternative motives for electing NIPS, such as for fetal sex disclosure, may arise and result in a less informed decision about proceeding with NIPS. Therefore, our study aimed to characterize low-risk patients’ motivations for NIPS election, compare motivations between informed and uninformed decision makers, and determine whether electing NIPS for fetal sex disclosure had any bearing on informed decision making. A survey that included a validated measure of informed choice (MMIC) and questions to assess patients’ motivations for NIPS was offered at four UTHealth clinics post genetic counseling. It was found that 44% of participants made an uninformed decision about testing. Participants with private insurers were 5.92 times more likely to make an informed decision (95% CI =1.28-33.05), and participants that self-identified as Black were 9.64 times more likely to make an uninformed decision (CI=0.009-0.737). Informed decision makers scored avoiding invasive procedures higher (p= 0.007) and ranked doing what family/friends desire lower (p = 0.0048) than uninformed decision makers. While most participants scored receiving information about genetic conditions highest, 12% of participants reported fetal sex disclosure as a priority. However, this was not found to be associated with uninformed decision making. Instead, prioritizing fetal sex was associated with a younger age (p=0.049) and experience with NIPS in previous pregnancies (p=0.034). This study ultimately established shared motivations with the high-risk population, showed no association between fetal sex disclosure motivation and uninformed decision making, characterized participants prioritizing fetal sex, and emphasized the importance of complete pre-test counseling.
Keywords
NIPS, Non-Invasive Prenatal Screening, NIPT, Motivations, Fetal Sex, Informed Decision Making