Grant: Doctoral Award - Frederick Banting and Charles Best Canada Graduate Scholarships

I am conducting a study to determine the potential impacts of direct to consumer (DTC) genetic risk profiles on the health care use and well-being of Canadians and measure the clinical and economic outcomes of their actions related to these profiles. DTC genetic risk profiles have been recently commercialized by several private companies (e.g. 23andme and deCODEme) and can be purchased directly, without a health care professional's involvement, through the Internet. After sending a saliva sample, within a few weeks a report of an individual's genetic risk profile for various health conditions (e.g. Alzheimer, diabetes, cardiac diseases, obesity, different types of cancer) is available to the consumer. The companies that offer this service mostly reside in the United States and currently do not require regulatory approval from bodies like the Food and Drug Administration for marketing of their products. Therefore, access to these tests in Canada is easy and difficult to prohibit since individuals can access them from the online global market. Although there is a potential for DTC genetic risk profiles to be valuable for early diagnosis and prevention of diseases and may lead to more informed medical decisions, the lack of regulatory oversight, consultation with health professionals and sufficient knowledge for interpretation of the results, may cause unintended outcomes. Some believe that consumers of those tests may end up with an unrealistic belief in genetic determinism, excessive anxiety, and fatalistic or risky behaviors. Many scientists believe that use of DTC risk profiles and tests will prevail in the near future. However little is known about their positive and negative impacts on individuals' well-being and health care use. Our understanding about this issue will contribute to the design of necessary regulations for DTC genetic tests and will help prepare our health care system to respond in such a way that maximize the potential benefits.