Author ORCID Identifier
0000-0002-4391-4924
Date of Graduation
5-2024
Document Type
Thesis (MS)
Program Affiliation
Genetic Counseling
Degree Name
Masters of Science (MS)
Advisor/Committee Chair
Leslie Dunnington, MS, CGC
Committee Member
Meagan Choates, MS, CGC
Committee Member
Megan Morand, MS, CGC
Committee Member
Pamela Promecene, MD
Committee Member
Syed S. Hashmi, MD, PhD, MPH
Committee Member
Stephanie Thompson
Abstract
Prenatal genetic counselors are essential to providing education, psychosocial support, and guidance on pregnancy options to patients who receive a fetal diagnosis of an anomaly or genetic condition. Therefore, genetic counselors should be well-educated on comprehensive pregnancy management options consisting of parenting, abortion, and adoption. The landscape of adoption education in genetic counseling practice was last characterized in 2010 by Perry and Henry, revealing substantial variability in both the inclusion of adoption-specific education in genetic counseling program (GCP) curricula and the discussion of pregnancy options with patients in prenatal practice. As a result, the authors published a call to action promoting the expansion of adoption-specific education in GCP curriculum and CEU opportunities. With over a decade having passed since this call to action, the current study sought to provide an update on adoption education content in GCP curricula, assess the current state of prenatal genetic counselors’ comfort levels and perceived preparedness counseling on the option of adoption, and identify factors influencing discussion of adoption as a pregnancy management option in the case of a non-life-limiting prenatal anomaly or genetic diagnosis. This study surveyed a representative sample of genetic counselors with prenatal genetic counseling experience in the US and Canada, where data from 148 participants was analyzed using descriptive statistics and statistical tests including Mann-Whitney U tests, Kruskal-Wallis tests with post-hoc Dunn’s tests, Fisher’s exact tests, and multivariable ordinal logistic models as appropriate in Stata (17.0, StataCorp LLC, College Station, TX) to determine statistical significance (p<0.05). One third of participants reported inclusion of adoption-specific education in their GCP curriculum as either mandatory or optional. Genetic counselors reported both lower comfort levels and lower frequencies counseling on adoption as a pregnancy management option compared to the options of parenting and abortion. Higher comfort levels counseling on adoption were significantly associated with certain curricular components, identification of certain adoption resources, post-grad CEU completion, more time spent in a prenatal role, and higher frequency counseling on adoption. The current study highlights a continued lack of adoption-specific educational opportunities and persistent discomfort with counseling on adoption as a pregnancy management option. Therefore, we provide updated guidance on adoption education and identification of resources for genetic counselors, genetic counseling programs, and national organizations to promote comprehensive, unbiased options counseling for pregnant individuals following prenatal detection of a non-life-limiting anomaly or genetic diagnosis.
Keywords
Prenatal, genetic counselor, genetic counseling, curriculum, adoption, pregnancy management options, reproductive choice, genetic condition, disability, fetal anomaly
Included in
Congenital, Hereditary, and Neonatal Diseases and Abnormalities Commons, Counseling Commons, Curriculum and Instruction Commons, Diagnosis Commons, Disability and Equity in Education Commons, Genetics Commons, Medical Genetics Commons, Women's Health Commons