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