Author(s)

Deborah Goodman^1*, Catherine O. Johnson², Deborah Bowen³, Lari Wenzel⁴, Karen Edwards¹

¹Department of Epidemiology, University of California, Irvine, CA, USA.
²Institute for Health Metrics and Evaluation, Seattle, WA, USA.
³School of Public Health, University of Washington, Seattle, WA, USA.
⁴Department of Public Health, University of California, Irvine, CA, USA.

Demographics, access to new treatment, altruistic motivations and continuity of care have been shown to influence motivation to participate in clinical trials. Less is known however, about factors that motivate research participants to agree to take part in observational studies and provide a biologic specimen. This study evaluates and quantitates factors that motivate participation in observational studies and provide a biospecimen among cancer patients, their family members, and controls. An online survey was completed by 450 participants from a cancer genetics registry, including cancer patients, their relatives, and controls. Overall, the benefit to society and the research institution reputation were the most important motivators for participation. Cancer cases were significantly more likely to endorse personal meaningfulness as a factor for participation compared to those without cancer and women were 50% more likely than men to believe that a family benefit is an important determinant of research participation. Researcher and institutional trustworthiness as well as security of stored data were most important when deciding whether to provide a biological sample, with differences seen by gender and history of cancer. This study demonstrated which factors are most important to participants when considering participation in an observational study and donating a biospecimen. Motivational factors significantly differed by gender as well as history and stage of cancer. The application of these study results may improve participation rates in cohort studies.

Participation, Research, Motivation, Observational Studies

Goodman, D. , Johnson, C. , Bowen, D. , Wenzel, L. and Edwards, K. (2019) Factors that Motivate Participation in Observational Genetic Cancer Research Studies. Open Journal of Epidemiology, 9, 156-172. doi: 10.4236/ojepi.2019.92014.