@article{IR,
      author = {Alvord, Teala and Marriott, Lisa K. and Nguyen, Phuc T.  and Shafer, Autumn and Brown, Kim and Stoller, Wesley and  Volpi, Jennifer L. and Vandehey-Guerrero, Jill and Ferrara,  Laura K. and Blakesley, Steven and Solomon, Erin and Kuehl,  Hannah and Palma, Amy J. and Farris, Paige E. and Hamman,  Kelly J. and Cotter, Madisen},
      url = {http://digitalcollections.ohsu.edu/record/8287},
      title = {Public perception of predictive cancer genetic testing and  research in Oregon},
      publisher = {Oregon Health and Science University},
      abstract = {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.},
      number = {IR},
      doi = {https://doi.org/10.6083/m326m2346},
      recid = {8287},
      address = {2020},
}