Genetic Counsellors’ Preferences Regarding Preimplantation Genetic Diagnosis: A Discrete Choice Experiment

GOH Elaine, MILLER Fiona A. MARSHALL Deborah, UNGAR Wendy

Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto

Background: Preimplantation genetic diagnosis (PGD) is an expensive technology that permits couples at high risk of a genetic disorder to test an embryo prior to implantation and avoid an affected pregnancy. In the absence of national policy regarding its use, the discretion of genetic counsellors (GCs) in their individual provinces / territories currently guides clinical practice. The study objective was to determine and quantify the preferences for PGD coverage arrangements – specifically, under what conditions (i.e., medical indications, fertility status, risk of genetic disease) and to what extent (i.e., number of in vitro fertilization cycles) public coverage should be provided.

Methods: A discrete choice experiment was conducted with Canadian GCs through the Canadian Association of Genetic Counsellors listserv and snowball recruitment. Respondents were asked to imagine that they were part of a policy committee advising on PGD coverage, and to choose between varying coverage scenarios based on PGD indication, risk of the condition, family history, fertility status and number of cycles. Multinomial logit regression was used to estimate part-worth utilities and importance scores.

Results: The survey was completed by 126 respondents (completion rate 41.2%). The risk of the condition was the most important attribute with a part-worth utility of 2.76 and an importance score of 41.4%. This was followed by PGD indication (2.06, 30.8%), family history (0.77, 11.5%), fertility status (0.55, 8.29%) and number of cycles (0.53, 8.02%).

Conclusions: These findings represent the first study to quantify preferences of front-line health professionals related to recommended PGD coverage. This knowledge contributes to evidence that may help to promote discussion and shape national PGD policy and regulation.