Motivations and Barriers to Participation in a Randomized Trial on Melanoma Genomic Risk: A Mixed-Methods Analysis

Abstract

The evolution of polygenic scores for use in for disease prevention and control compels the development of guidelines to optimize their effectiveness and promote equitable use. Understanding the motivations and barriers to participation in genomics research can assist in drafting these standards. We investigated these in a community-based randomized controlled trial that examined the health behavioral impact of receiving personalized melanoma genomic risk information. We examined participant responses in a baseline questionnaire and conducted interviews post-trial participation. Motivations differed in two ways: (1) by gender, with those identifying as women placing greater importance on learning about their personal risk or familial risk, and how to reduce risk; and (2) by age in relation to learning about personal risk, and fear of developing melanoma. A barrier to participation was distrust in the handling of genomic data. Our findings provide new insights into the motivations for participating in genomics research and highlight the need to better target population subgroups including younger men, which will aid in tailoring recruitment for future genomic studies.

Publics’ knowledge of, attitude to and motivation towards health-related genomics: a scoping review

“…Half of all of motivation studies were conducted with people who were engaged with genomics (S2) and a further 14.7% included both groups (S1 and S2). Of these studies, three assessed reasons for declining [ 50 , 52 , 53 ] and the remainder noted participant concerns.…”

“…Further, few studies investigated reasons for declining to participate. Of the reviewed motivation studies around half were with publics who had undertaken a genomic test and of those, three investigated decliners [ 50 , 52 , 53 ], leaving a gap in our understanding of barriers that prevent publics from engaging with genomics. Where motivation was explored hypothetically, potential barriers were identified such as cost of testing, indicating a need to remove situational obstacles for equity of access to genomics.…”

Special Issue: “Genetic Counseling and Genetic Testing in Precision Medicine”

“…This means that individuals taking part in the study can receive information about additional genetic risks beyond the specific focus of the research, broadening the scope of genetic information that can be provided to participants. Another avenue being explored is the screening of healthy individuals in the community for genetic risk factors associated with melanoma [ 6 ]. The third approach represented in this Special Issue is providing genetic counseling and testing through oncology centers, facilitated by oncology nurses [ 7 ].…”