ELSIcon2022 • Paper • June 1, 2022
Caitlin McMahon, Nicole Foti, Mel Jeske, William Britton, Janet Shim, and Sandra Soo-Jin Lee on behalf of Ethics of Inclusion Study Team
ELSIcon2022 • Paper • June 2, 2022
Lisa Dive, Ainsley Newson
ELSIcon2022 • Paper • June 2, 2022
K. Jameson Floyd, Ashley Buscetta, Vence Bonham
ELSIcon2022 • Flash • June 3, 2022
Amy Blumling, Melanie Myers, Cindy Prows, Kristin Childers-Buschie, Michelle McGowan
Hiratsuka and colleagues developed these six scenarios for use in small group discussions focused on their implications. Scenarios are nonpartisan and explore genetic research, direct-to-consumer genetic tests, and return of results.
This topic guide can be used to interview research participants on their perceptions of recall by genotype research, which recruits on the basis of genotype. Topics include understandings of RbG research, expectations about recruitment, and preferences for the communication of research findings.
Ploug and Holm developed this choice based conjoint survey to record participant preferences about whole genome and exome sequencing results reporting in three scenarios with seven different attributes. The English-language survey was developed for use with the general, Danish population. An example of a choice task with 3 concepts is available in Figure 1 of the linked publication.
Sayeed and colleagues developed this survey for use in the Project Baseline Health Study, which collected a variety of participant data, including genetic test results. The survey includes questions about which results participants would be willing to share with clinical professionals (e.g., doctor, nurse), confidence in the safety of their personal health information, perception of the potential benefits, feelings upon getting results, interest in future test results, and other topics.