Usability Testing and Understanding Genomic Uncertainty

Abstract

Many cancers have a familial component that can be passed down to future generations and increase their risk of getting that cancer. Understanding one’s family history of cancer can help that individual take preventative or prophylactic measures to decrease risk of cancer. A common way for medical providers to determine family history and cancer risk is through family health history collection surveys. These family health history collection surveys should be easy to use and have language that most reading levels can understand in order to get the most accurate results. Usability testing is one way to gain feedback on how well surveys and websites are understood by people at the average reading level. This study explored the opinions and views of participants who took a family health history collection survey and explored a website that served as a landing page for the survey. In addition to usability, I assessed the role of uncertainty in genetic testing while evaluating reactions to the website. Genetic tests are available to evaluate many things about a person’s ancestry and health, but it is unclear how the general public view the accuracy of such tests and what they expect to get out of genetic testing. This qualitative study used semi-structured interviews to learn about participants’ experiences with genetic testing and how they plan or would plan, to use the results.