Date of Award


Document Type

Thesis - Closed Access

Degree Name

MS in Human Genetics

First Advisor

Gretchen MacCarrick, MS, CGC

Second Advisor

Melissa Russo, MD

Third Advisor

Michelle Bina, MS, CGC


Patients with vascular connective tissue disorders (vCTDs) are counseled on the risks of carrying a pregnancy and alternative methods of family planning. We performed semi-structured interviews to explore the experiences of individuals with vCTDs and a subset of their partners about decision-making related to alternative family planning options, specifically focusing on those considering surrogacy. This cross-sectional qualitative study investigated key themes in decision-making and experiences pursuing alternative family planning options (surrogacy, in vitro fertilization, adoption), and advice to peers and medical professionals about family planning counseling. Participants noted a lack of specific information from medical professionals about these alternative options, necessitating the need for self-education. Major factors weighed by participants in decision-making included cost, duration of time for the process, influence of a person’s social network (friends, family, agencies/consultants), and emotional toll. Participants discussed emotional factors (anxiety, fear, loss of control, uncertainty) influence on decision-making and the surrogacy experience. Participant advice to medical professionals regarding discussion about having children included gauging the patient’s receptiveness to the acceptance of the information and tailoring the amount and timing of information. Limitations of this study include sample size and selection bias, impacting the generalizability and transferability of the data to others in the vCTD community. Overall, a lack of information about alternative family planning options from medical providers provides insight into the need for resources to aid in education. Further areas of research include exploring barriers to surrogacy in the wider vCTD population and creation of an informational tool for patient education.

Under author imposed embargo.
Available for download on Thursday, April 30, 2026