On Equity and Evidence in Precision Medicine Leila Jamal, ScM, CGC Research Assistant, Baylor College of Medicine PhD Candidate, Johns Hopkins University
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On Equity and Evidence in Precision Medicine
Leila Jamal, ScM, CGCResearch Assistant, Baylor College of Medicine
PhD Candidate, Johns Hopkins University
23andMe; www.nytimes.com
www.nature.com
www.npr.org
12 of 20
Fundamental Tension
BIOLOGICAL DIFFERENCE=OPPRESSION
?
BIOLOGICAL DIFFERENCE=OPPORTUN
ITY?
1%
3%
0%
12%
75%
2%6%
Chart Title
American Indian/Alaska Native
Asian
Native Hawaiian/Pacific Islander
Black or African American
White
More Than One Race Selected
Not Reported
CSER Research Participants by Self-Identified Race
• Not enough variant data from non-European ancestry populations?
• Oversample individuals with non-European ancestry and deposit pathogenic findings in public databases!
Physician reviews family history information and discloses results from Genome Report Patient’s electronic medical record
Medical Record Review
Standard of Care +
Family History Review
Standard of Care +
Family History Review
+ Genome Report
Standard of Care +
Family History Review
+Genome Report
Standard of Care+
Family History Review
African Americans with Mendelian Phenotypes
Randomize each patient to receive
Healthy African Americans
Randomize each patient to receive
Ph
ysicia
n &
patie
nt
ou
tcom
es
A Work in Progress..
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