000008287 001__ 8287
000008287 005__ 20240415105928.0
000008287 0247_ $$2DOI$$a10.6083/m326m2346
000008287 037__ $$aIR
000008287 041__ $$aeng
000008287 245__ $$aPublic perception of predictive cancer genetic testing and research in Oregon
000008287 260__ $$bOregon Health and Science University
000008287 269__ $$a2020
000008287 336__ $$aAbstract
000008287 520__ $$aNationwide efforts are engaging communities in large genetic studies to better estimate the population-wide prevalence of some heritable cancers that have medical recommendations, however, effective communication about benefits and risks of both personal genetic testing and participation in bio-repositories remains challenging in some communities. To successfully engage an Oregon population in longitudinal research that includes predictive genetic testing for pathogenic or likely pathogenic variants associated with an increased risk for cancer, researchers conducted 35 focus groups with 203 adults (two of which were held in Spanish) in 24 of Oregon's 36 counties to better understand knowledge and attitudes related to genetic testing and willingness to participate in longitudinal genetic research. While participants at most focus group sites (33 of 35) described concerns about outcomes as barriers to predictive genetic testing, the desire to learn about health risks in oneself to inform personal or family medical decisions buffered fears for many participants, with 33 of the 35 sites citing families (e.g., children, close relatives, extended family members) as key motivators for participation in genetic research. Participants, particularly in rural areas, highlighted critical factors for research recruitment, such as trust, personal interaction, public education about genetic research, and clear communication about study goals and processes. Our statewide findings reflect that public interest in predictive cancer genetic testing and cancer genetic research can surpass lack of knowledge of the complex topics, particularly when benefits for self and family are emphasized and when study considerations are well articulated.
000008287 540__ $$fCC BY
000008287 542__ $$fIn copyright - joint owners
000008287 650__ $$aQualitative Research$$034737
000008287 650__ $$aMarketing$$035046
000008287 650__ $$aCommunity-Institutional Relations$$016952
000008287 650__ $$aPerception$$023779
000008287 650__ $$aHealth Disparate, Minority and Vulnerable Populations$$013779
000008287 650__ $$aRural Population$$025633
000008287 650__ $$aFocus Groups$$029719
000008287 650__ $$aGenetic Testing$$019469
000008287 651__ $$aOregon$$041094
000008287 6531_ $$acancer
000008287 6531_ $$aneoplasms
000008287 6531_ $$acancer risk
000008287 6531_ $$apathogenetic variants
000008287 6531_ $$ahealth risk
000008287 691__ $$aOHSU-PSU School of Public Health$$041366
000008287 7001_ $$aAlvord, Teala$$uOregon Health and Science University$$041354
000008287 7001_ $$aMarriott, Lisa K.$$uOregon Health and Science University$$041354
000008287 7001_ $$aNguyen, Phuc T.$$uOregon Health and Science University$$041354
000008287 7001_ $$aShafer, Autumn$$uOregon Health and Science University$$041354
000008287 7001_ $$aBrown, Kim$$uOregon Health and Science University$$041354
000008287 7001_ $$aStoller, Wesley$$uOregon Health and Science University$$041354
000008287 7001_ $$aVolpi, Jennifer L.$$uOregon Health and Science University$$041354
000008287 7001_ $$aVandehey-Guerrero, Jill$$uOregon Health and Science University$$041354
000008287 7001_ $$aFerrara, Laura K.$$uOregon Health and Science University$$041354
000008287 7001_ $$aBlakesley, Steven$$uOregon Health and Science University$$041354
000008287 7001_ $$aSolomon, Erin$$uOregon Health and Science University$$041354
000008287 7001_ $$aKuehl, Hannah$$uOregon Health and Science University$$041354
000008287 7001_ $$aPalma, Amy J.$$uOregon Health and Science University$$041354
000008287 7001_ $$aFarris, Paige E.$$uOregon Health and Science University$$041354
000008287 7001_ $$aHamman, Kelly J.$$uOregon Health and Science University$$041354
000008287 7001_ $$aCotter, Madisen$$uOregon Health and Science University$$041354
000008287 711__ $$aResearch Week$$uOregon Health and Science University$$d2020
000008287 8564_ $$9db41197a-5490-4fc2-bc0a-220d3a4b4c72$$s48041$$uhttps://digitalcollections.ohsu.edu/record/8287/files/Teala-Alvord.pdf
000008287 905__ $$a/rest/prod/m3/26/m2/34/m326m2346
000008287 980__ $$aResearch Week