“Saving Lives” A Qualitative Study on a Cancer Registry's Experience on the Return of Individual Results from Genetic Research

Background: Following approval from their respective Institutional Review Board, the six sites of the Colorectal Cancer Family Registry (C-CFR) has initiated the return of individual results (ROR) from genetic research directly to participants because of the high predictive value and known clinical utility of Lynch Syndrome genetic testing results. To date, relatively few studies have explored researchers’ attitudes and preferences surrounding ROR. 

Objective: To explore, via key informant interviews with C-CFR staff, the decision-making process when developing site-specific ROR policy.

Method: Semi-structured, in-depth, qualitative interviews focused on decision-making, experience with ROR policy development and the communication of research findings were conducted with 2-3 researchers from each of the six C-CFR sites.

Results: The majority of the key informants shared that the clinical benefit of the genetic test result drove the decision-making on their ROR policy. Logistical and financial barriers were primary reasons why some sites chose not to return or delayed implementation of their ROR policy. The healthcare infrastructure at each site influenced key differences in ROR policy. Researchers expressed that the ROR experience was rewarding, suggesting that participants appreciated re-contact. Findings suggest ROR policy should include involvement of a genetic counselor and a centralized mechanism to standardized the result return effort.  

Conclusion: Especially in the context of an international cancer registry, the close investigation of the C-CFR consortia’s ROR experience help better define how genetic result return is managed, as well as provide key insights into how ROR influences research participants, their families, and the broader public in the context of CRC prevention and surveillance.