Grant: Travel Awards - Institute Community Support

Genomic sequencing is a new type of genetic test that has the potential to provide patients with a wide variety of information about their risks for many different diseases. It is currently recommended that risks for diseases that can be treated or prevented, in other words, "medically actionable" results, be returned to patients, but research shows that patients are interested in learning all types of disease risks. Evaluating the value of genetic tests such as genomic sequencing is challenging, because there are few ways to measure the personal value that individuals may find from learning genomic sequencing results. We conducted interviews with patients to explore what motivates them to hypothetically want to learn a wide variety of disease risks from genomic sequencing. We interviewed 31 participants, and analyzed interview data through thematic analysis. We found that many participants viewed all types of results to be "actionable," and valued learning genetic disease risks so that they could take control over disease outcome, or other aspects of their personal life. We found that a major motivator both for wanting to learn and not wanting to learn disease risks was to preserve quality of life. Our results suggest that developing measures of quality of life that are specific to genetic testing may be a way to measure the value of genetic tests.