TY  - GEN
N2  - Nationwide efforts are engaging communities in large genetic studies to better estimate the population-wide prevalence of some heritable cancers that have medical recommendations, however, effective communication about benefits and risks of both personal genetic testing and participation in bio-repositories remains challenging in some communities. To successfully engage an Oregon population in longitudinal research that includes predictive genetic testing for pathogenic or likely pathogenic variants associated with an increased risk for cancer, researchers conducted 35 focus groups with 203 adults (two of which were held in Spanish) in 24 of Oregon's 36 counties to better understand knowledge and attitudes related to genetic testing and willingness to participate in longitudinal genetic research. While participants at most focus group sites (33 of 35) described concerns about outcomes as barriers to predictive genetic testing, the desire to learn about health risks in oneself to inform personal or family medical decisions buffered fears for many participants, with 33 of the 35 sites citing families (e.g., children, close relatives, extended family members) as key motivators for participation in genetic research. Participants, particularly in rural areas, highlighted critical factors for research recruitment, such as trust, personal interaction, public education about genetic research, and clear communication about study goals and processes. Our statewide findings reflect that public interest in predictive cancer genetic testing and cancer genetic research can surpass lack of knowledge of the complex topics, particularly when benefits for self and family are emphasized and when study considerations are well articulated.
DO  - 10.6083/m326m2346
DO  - DOI
AB  - Nationwide efforts are engaging communities in large genetic studies to better estimate the population-wide prevalence of some heritable cancers that have medical recommendations, however, effective communication about benefits and risks of both personal genetic testing and participation in bio-repositories remains challenging in some communities. To successfully engage an Oregon population in longitudinal research that includes predictive genetic testing for pathogenic or likely pathogenic variants associated with an increased risk for cancer, researchers conducted 35 focus groups with 203 adults (two of which were held in Spanish) in 24 of Oregon's 36 counties to better understand knowledge and attitudes related to genetic testing and willingness to participate in longitudinal genetic research. While participants at most focus group sites (33 of 35) described concerns about outcomes as barriers to predictive genetic testing, the desire to learn about health risks in oneself to inform personal or family medical decisions buffered fears for many participants, with 33 of the 35 sites citing families (e.g., children, close relatives, extended family members) as key motivators for participation in genetic research. Participants, particularly in rural areas, highlighted critical factors for research recruitment, such as trust, personal interaction, public education about genetic research, and clear communication about study goals and processes. Our statewide findings reflect that public interest in predictive cancer genetic testing and cancer genetic research can surpass lack of knowledge of the complex topics, particularly when benefits for self and family are emphasized and when study considerations are well articulated.
AD  - Oregon Health and Science University
AD  - Oregon Health and Science University
AD  - Oregon Health and Science University
AD  - Oregon Health and Science University
AD  - Oregon Health and Science University
AD  - Oregon Health and Science University
AD  - Oregon Health and Science University
AD  - Oregon Health and Science University
AD  - Oregon Health and Science University
AD  - Oregon Health and Science University
AD  - Oregon Health and Science University
AD  - Oregon Health and Science University
AD  - Oregon Health and Science University
AD  - Oregon Health and Science University
AD  - Oregon Health and Science University
AD  - Oregon Health and Science University
T1  - Public perception of predictive cancer genetic testing and research in Oregon
DA  - 2020
AU  - Alvord, Teala
AU  - Marriott, Lisa K.
AU  - Nguyen, Phuc T.
AU  - Shafer, Autumn
AU  - Brown, Kim
AU  - Stoller, Wesley
AU  - Volpi, Jennifer L.
AU  - Vandehey-Guerrero, Jill
AU  - Ferrara, Laura K.
AU  - Blakesley, Steven
AU  - Solomon, Erin
AU  - Kuehl, Hannah
AU  - Palma, Amy J.
AU  - Farris, Paige E.
AU  - Hamman, Kelly J.
AU  - Cotter, Madisen
L1  - https://digitalcollections.ohsu.edu/record/8287/files/Teala-Alvord.pdf
PB  - Oregon Health and Science University
LA  - eng
PY  - 2020
ID  - 8287
L4  - https://digitalcollections.ohsu.edu/record/8287/files/Teala-Alvord.pdf
KW  - Qualitative Research
KW  - Marketing
KW  - Community-Institutional Relations
KW  - Perception
KW  - Health Disparate, Minority and Vulnerable Populations
KW  - Rural Population
KW  - Focus Groups
KW  - Genetic Testing
KW  - cancer
KW  - neoplasms
KW  - cancer risk
KW  - pathogenetic variants
KW  - health risk
TI  - Public perception of predictive cancer genetic testing and research in Oregon
Y1  - 2020
L2  - https://digitalcollections.ohsu.edu/record/8287/files/Teala-Alvord.pdf
LK  - https://digitalcollections.ohsu.edu/record/8287/files/Teala-Alvord.pdf
UR  - https://digitalcollections.ohsu.edu/record/8287/files/Teala-Alvord.pdf
ER  -