UC San Diego

Background: Moving from studying diseases to states of optimal health brings new logistical, ethical, legal, and social implications for Precision Health research. The Wu Tsai Human Performance Alliance seeks to study elite performers in precise detail to understand both human performance and translate these findings to the public on a global scale. To achieve their goals, the Alliance is implementing a biobank, which collects, stores, and shares biological samples and health information for future, unspecified research. To inform the design, conduct, and implementation of their Precision Health research and biobank, this study sought to explore the contextual factors of professional sports in the US that may impact successful research implementation. Potential adaptations to improve the acceptability and, by extension, the generalizability of this research were also identified.

Methods: Dissemination and Implementation Science (DIS) was adapted from implementing evidence-based interventions for the implementation of Precision Health research interventions. This exploratory study conducted one-hour, semi-structured, key informant interviews of professional athletes (n= 20) and their non-athlete stakeholders (n= 22) using an adapted version of the Practical, Robust, Implementation and Sustainability Model (PRISM). A hybrid qualitative method was used to simultaneously apply deductive structured codes from PRISM and inductive codes based on grounded theory.

Results: Overall, participants reported interest in the Alliance’s research, but willingness to participate or to encourage athletes to participate was usually conditional. Major themes were vulnerabilities (athletes’ characteristics and risks for discrimination), the impact of the research (potential for negative impacts on sports industry and widening health disparities), desires for direct benefit (e.g., individual results or profit-sharing), and decision-making (desires to control usage of samples and data). Several adaptations to traditional research practices, such as data embargoes and dynamic consent, were identified as likely to increase the perceived acceptability of the research and by examining DIS outcomes were theorized to improve the generalizability of the research.

Discussion: This study provided evidence for the utility of supplementing ethical, legal, and social implications (ELSI) research with DIS methods for planning early-stage research intervention implementation. This study described the logistical, ethical, legal, and social implications of human performance research (HPR) and biobanking for aspiring and professional athletes, while identifying key decision points and potential impacts on implementation outcomes. This study allows researchers to make data-driven decisions to adapt traditional research practices to make the research more acceptable and accessible to future participants with the ultimate goal improve the study’s ability to recruit a representative sample.