Uncertainty in the Process of Communicating Cancer-related Genetic Risk Information with Patients: A Scoping Review

Abstract

In the era of precision medicine, patients must manage the uncertainty caused by ambiguous genetic information. To aid health practitioners in effectively communicating genetic information, this study classified the types of uncertainty involved in these communication processes. A search of recent literature turned up 64 articles that measured and/or discussed patients’ perceptions and/or feelings of uncertainty related to the communication process of cancer-related genetic information. In reviewing these papers, six types of uncertainty regarding cancer-related genetic information were identified: (1) uncertainty about understanding genetic information (n = 25; 39.1%); (2) uncertainty about future cancer risks (n = 34; 53.1%); (3) uncertainty about managing known genetic information or mutation status (n = 33; 51.6%); (4) uncertainty about the utility of genetic information (n = 5; 7.8%); (5) uncertainty about genetic test results before undergoing testing or receiving the results (n = 10; 15.6%); and (6) uncertainty about the impact of genetic results on family and life (n = 11; 17.2%). These six types of uncertainty serve as a helpful taxonomy for developing, validating, and utilizing future measures of uncertainty in the context of cancer-related genetic risk communication.

Acknowledgments

This study is an analysis of papers identified through a scoping review project on cancer-related genetic risk communication. I would like to acknowledge the researchers at the Huntsman Cancer Institute and National Cancer Institute who participated in the literature search for the original scoping review project. I would also like to recognize Lianshan Zhang, a doctoral student at the National University of Singapore, who served as a coder for this scoping review paper.

Additional information

Funding

The original scoping review project on cancer-related genetic risk communication was supported by the National Cancer Institute (HHSN261201700078P). The present sub-review project was supported by the National University of Singapore (R124000090133).