Direct-to-Consumer Genetic Tests and Canadian Genetic Counselors: A Pilot Exploration of Professional Roles in Response to Novel Biotechnologies

Abstract

The role of genetic counselors is evolving in response to health-related direct-to-consumer genetic tests (DTC-GT). While there is consensus in the literature that pre- and post-DTC-GT genetic counseling would benefit consumers, genetic counselors have reservations about DTC-GTs, and there is a paucity of research on providing DTC-GT counseling. This pilot quantitative survey is the first study to examine Canadian genetic counselors' views on DTC-GTs and how this disruptive biotechnology affects their role, and consumer informed consent and privacy. Canadian genetic counselors are cognizant of the harm to informed consent and privacy associated with DTC-GT, but are hesitant to engage directly, wary of misusing clinical time and resources. However, counselors are open to producing educational materials on DTC-GTs and collaborating with other stakeholders and the DTC-GT industry to support consumers. In this study, practical considerations for DTC-GT counseling sessions are discussed, including the unique needs of DTC-GT patients and the challenges posed by DTC-GTs to the genetic counseling duty to inform. This research benefits genetic counselors and physicians by examining how best to utilize genetic counselors' skills in the DTC-GT context, to minimize burdens on the healthcare system and support DTC-GT consumers.

Keywords: DTC-GT; direct-to-consumer genetic testing; ethics; genetic counseling; health literacy; healthcare resource utilization.

Figure 1

Genetic counselors’ responses to the yes/no survey queries. The survey items covered themes around informed consent, privacy, and the role of GCs with regards to DTC-GTs.

Figure 2

Representation of the GC participants across Canada. Most of the participants practice in Ontario, although there was representation from most provinces in the country.