Genetic Counseling

School of Health and Human Sciences

Patient Experience with the Consent Process of Preimplantation Genetic Diagnosis (PGD) and Preimplantation Genetic Screening (PGS)
Capstone Project Committee: Allison Hebner, MS, LCGC, Randi Stewart, MS, CGC, Serena Talcott Baughman, MS, CGC
Previous studies on preimplantation genetic diagnosis (PGD) and preimplantation genetic screening (PGS) have focused more on its ethical implications and less on standardizing consent practices and ensuring quality care. The consent process is an opportunity for providers to have an open discussion with patients and promote the empowerment of patients. This exploratory study aimed to describe patient experiences with the consent process for PGD/PGS and identify strengths and areas for potential improvement. A survey was created and distributed electronically to members of RESOLVE and Shine Infertility support groups and 11 participants completed the survey. Participants had PGD/PGS in the last two years, were at different phases in PGD/PGS process, and experienced various pregnancy outcomes. Three had pursued PGD in addition to PGS. All participants reported overall satisfaction with the experience of PGD/PGS and indicated that they were able to ask questions during the consent process. Areas of dissatisfaction related to the manner of delivery and content. More than half (n=6) of participants reported feeling some level of pressure from providers and two participants reported limitations of testing were not described to them. Some participants felt they were not fully informed about miscarriage rates, implications for amniocentesis, and verification of genetic disease. These aspects of dissatisfaction can be explored in future studies. Continual assessment of the consent process will help ensure patients are provided the proper information to make autonomous decisions regarding their reproduction.
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