Public perceptions of educational needs in personalized medicine

Background: The continued development of genomics and personalized medicine could have great benefits for public health, but these benefits cannot be realized if there is a lack of understanding of the meaning of genomic test results and how they can be appropriately applied to any individual patient for measurable health improvements. Higher levels of health literacy have been associated with use of preventive health services and engagement in health decision-making. The public's health and genomic literacy becomes of particular importance with direct-to-consumer genomic testing, as those tested outside of a clinical setting may not have access to a health care professional (HCP) to provide full interpretation of results and advice about risk management. Aims: To identify perceived needs and expectations of the public for education about genomic profiling. Methods: Mixed-method public engagement workshops with citizens aged 50+ in Ottawa ON (n=46) and St John's NL (n=74). Results: Participants perceived a need for education on several levels. As patients in a publicly funded system, they expected HCPs to provide them with interpretation of test results and counseling about risk, raising questions about the current knowledge and competency of HCPs in genomics and whether it would be sufficient to meet patient needs. It was also believed that members of the public in general need to be better educated about genetics. Concerns were raised about educational burden, and whether increased costs of public and professional education and training would offset any potential health care savings through personalized medicine.