{
  "abstract": "Objective Develop and study a culturally tailored genomics education tool to better inform future consent processes for genomics research participation among a medically underserved population with diabetes.Design A single-arm, cohort pre/postsurvey study to assess an educational intervention developed using a community engaged approach.Setting Federally Qualified Health Centers in San Diego.Participants Adults (18 years or older) self-identifying as Latino or Hispanic with type 2 diabetes or a history of gestational diabetes were invited to participate. A total of 111 enrolled and completed the preintervention survey; 60 completed the education session and postsurvey. Lay healthcare promotoras previously trained to offer bilingual diabetes education and support were also invited; 34 enrolled and completed the study.Intervention Using community-engaged research approaches, we developed a genomics education programme to include required elements of informed consent for future diabetes genomics research. The 1-hour, face-to-face genomics education programme was delivered 14 times with a variety of day versus evening and weekday versus weekend options, across a 9-month period. Participants completed a 21-item survey, which included 12 items measuring genomics knowledge and 9 items assessing attitudes towards genomics in healthcare.Primary and secondary outcome measures Primary outcome was the difference between pre and posteducation mean total genomics knowledge scores among the patients who completed the education session and postsurvey. Secondary outcomes included comparison of baseline survey scores between patient and promotora subgroups, difference between patient pre and posteducation mean total attitude scores, and prescore to postscore changes within each knowledge and attitude survey item. An exploratory analysis of associations between preintervention scores and sociodemographic characteristics was also completed.Results Among 60 patients, mean genomics knowledge scores significantly increased from 7.3 (SD=1.9) preintervention to 9.4 (SD=1.5) postintervention (p<0.0001). Preintervention, promotoras (mean 8.1, SD=2.0) had significantly higher knowledge scores than patients (mean 6.9, SD 2.3) (p=0.01). Similarly, promotoras (mean 6.8, SD1.3) demonstrated a more positive attitude than patients (mean 6.0, SD=1.4) (p=0.0008). Patient attitudes towards genomic testing did not change significantly from preintervention to postintervention (6.2 (SD=1.4) vs 6.3 (SD=1.4), p=0.51).Conclusions A community-informed education intervention improved genomics knowledge in an under-represented population, providing a model to foster more adequately informed consent for advanced technology research participation.",
  "authors": [
    {
      "affiliations": [
        "Medicine, Scripps Green Hospital, La Jolla, California, USA"
      ],
      "name": "Alondra A Rivera-Raices"
    },
    {
      "affiliations": [
        "Endocrinology, Scripps Clinic La Jolla—Genesee Executive Plaza, San Diego, California, USA",
        "Endocrinology, Scripps Memorial Hospital La Jolla, La Jolla, California, USA"
      ],
      "name": "Liliana Uribe-Bruce"
    },
    {
      "affiliations": [
        "Scientific Research, Scripps Health, San Diego, California, USA",
        "Scripps Whittier Diabetes Institute, San Diego, California, USA"
      ],
      "name": "Emily Rose N San Diego"
    },
    {
      "affiliations": [
        "Endocrinology, Scripps Clinic La Jolla—Genesee Executive Plaza, San Diego, California, USA",
        "Scientific Research, Scripps Health, San Diego, California, USA",
        "Scripps Whittier Diabetes Institute, San Diego, California, USA",
        "Translational Institute, The Scripps Research Institute, San Diego, California, USA"
      ],
      "name": "Athena Philis-Tsimikas"
    },
    {
      "affiliations": [
        "Translational Institute, The Scripps Research Institute, San Diego, California, USA"
      ],
      "name": "Jill Waalen"
    },
    {
      "affiliations": [
        "Scientific Research, Scripps Health, San Diego, California, USA"
      ],
      "name": "Natalia Orendain"
    },
    {
      "affiliations": [
        "Scientific Research, Scripps Health, San Diego, California, USA",
        "Scripps Whittier Diabetes Institute, San Diego, California, USA"
      ],
      "name": "Maria Isabel Garcia"
    },
    {
      "affiliations": [
        "Scientific Research, Scripps Health, San Diego, California, USA",
        "Scripps Whittier Diabetes Institute, San Diego, California, USA"
      ],
      "name": "Monica Ruiz"
    },
    {
      "affiliations": [
        "Scientific Research, Scripps Health, San Diego, California, USA"
      ],
      "name": "Adelaide L Fortmann"
    },
    {
      "affiliations": [
        "Department of Psychology, San Diego State University, San Diego, California, USA"
      ],
      "name": "Linda C Gallo"
    },
    {
      "affiliations": [
        "Medicine, Scripps Green Hospital, La Jolla, California, USA",
        "Translational Institute, The Scripps Research Institute, San Diego, California, USA"
      ],
      "name": "Laura Nicholson"
    }
  ],
  "title": "Evaluation of an education intervention to support genomics research participation: a community-based pre–post study among participants under-represented in diabetes genomics research",
  "uid": "f08f2bd9-f6de-5544-aff4-2850b0dd38bf"
}