Direct Access Genetic Testing: Lessons Learned from The Multiplex Initiative Colleen M. McBride, Ph.D. Direct Access Genetic Testing: Lessons Learned from

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  • Direct Access Genetic Testing: Lessons Learned from The Multiplex Initiative Colleen M. McBride, Ph.D. Direct Access Genetic Testing: Lessons Learned from The Multiplex Initiative Colleen M. McBride, Ph.D.
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  • Take-home messages Considerable self-selection in who seeks testing Use of effective communication strategies provides adequate decision support Testers can understand the limits of test feedback
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  • Todays remarks Overview of Multiplex Initiative Highlight data to support each take-home message
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  • Multiplex Aims In a population based sample, under ideal dissemination conditions: How many people will consider and be interested in multiplex testing? What factors will predict interest and uptake in testing How will individuals be affected by test results?
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  • Henry Ford Health System clinical recruitment site Group Health Cooperative Survey Center Population-based sample Healthy adults Ages 25-40 Without diseases on test battery Study Design
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  • Sampling strategy AA White NeighborhoodMenWomenMenWomen High Ed14%12%10% 9% Low Ed18%14%12% 10%
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  • Multiplex Study Design Identify HFHS Sample Conduct Three-Month Follow-Up Conduct Baseline Survey Provide Access to Web Site Schedule Clinic Visit and Test Provide Results
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  • Recruitment
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  • Multiplex Prototype Test 8 health conditions & 15 genes Diabetes KCNJ11 CAPN10 PPARg TCF7L2 Heart Disease APOB NOS3 CETP High Cholesterol LIPC Hypertension AGT Lung cancer MPO Colon Cancer MTHFR Skin Cancer MC1R Osteoporosis ESR1 IL6 COL1A1
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  • Multiplex test feedback
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  • Surveyed population N=1959 White37% Male gender47% HS+ educated75% Excellent self-rated health23% Mean worry about health conditions 7pt scale 4.0 (sd=1.54) BMI > 3035% Current smoker28% Want to change a health habit82% Mean confidence to use health care 7pt scale 4.8 (sd=.54) Mean confidence to understand genetics 7pt scale 5.7 (sd=1.06)
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  • Self selection & social groups African Americans likelihood of opting out of survey, website & testing Less educated likelihood of opting out of survey & website Men likelihood of opting out of survey Hensley-Alford et al., Public Health Genomics, 2010 Take home message 1
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  • Multiplex Initiative Uptake 14% tested 31% considered testing Take home message 1
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  • Best predictors of logging on Demographic characteristics Internet access Perceived importance of learning about genetics Take home message 1
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  • Best Predictors of Testing McBride et al., Genetics in Medicine, 2009 Take home message 1
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  • Engagement with Website information Agreed to test (n=266) Mean pages Did not agree to test (n=260) Mean pages P-value Test info 4 available pages 3.22.5