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. Author manuscript; available in PMC: 2021 Apr 29.
Published in final edited form as: J Genet Couns. 2019 Jan 21;28(3):587–601. doi: 10.1002/jgc4.1078

Table II.

Racial and Ethnic Differences in Knowledge about Genetic Testing

Source Article Title Year/Data a Study Sample (Public/Patients) Knowledge Variable(s) Knowledge Findings (Reference group listed last) b
Awareness of Genetic Tests
Singer et al. 2008 Trends in U.S. Attitudes toward Genetic Testing, 1990-2004 1990, 1996, 2004 GSS, Nationally representative sample General public 1990: N=917 1996: N=969 2004: N=2,812 U.S. “How much would you say you have heard or read about genetic testing?” Great deal vs nothing: NW vs W: Beta= −0.632 (p<.05)
Not much vs nothing: NW vs W: Beta=−0.763 (p<.05)
Haga et al. 2012 Survey of U.S. Public Attitudes Towards Pharmacogenetic Testing 2009 survey, Nationally representative sample General public N=1,139 U.S. Have heard about genetic tests (question not provided) W vs NW: OR=1.74 (CI= 1.22-2.49)
Catz et al. 2005 Attitudes about Genetics in Underserved, Culturally Diverse Populations 2003 Focus groups, Convenience sample Patients and healthcare workers N=55 New York “Medical tests to find out if of having some kinds of diseases are called genetic tests. These tests do not tell you if you have a disease. These tests can tell you your chances (or risks) of getting a disease. What have you heard, seen or read about genetic testing?” W, B, H, and C all had low awareness of genetic testing (no difference observed)
Awareness of Direct-to-Consumer (DTC) Genetic Tests
Langford et al. 2012 Racial and Ethnic Differences in Direct to-Consumer Genetic Tests Awareness in HINTS 2007: Sociodemographic and Numeracy Correlates 2007 HINTS, Nationally representative sample General public N=6,754 U.S. “Genetic tests that analyze your DNA, diet, and lifestyle for potential health risks are currently being marketed by companies directly to consumers. Have you heard or read about these genetic tests?” B vs W: OR=0.79 (CI=0.65-0.97)
H vs W: NSc
Finney Rutten 2012 Increasing Public Awareness of Direct-to-Consumer Genetic Tests: Health Care Access, Internet Use, and Population Density Correlates 2008, 2011 HINTS, Nationally representative sample representative sample General public 2008: N=7,674 2011: N=3,959 U.S. “Genetic tests that analyze your DNA, diet, and lifestyle for potential health risks are currently being marketed by companies directly to consumers. Have you heard or read about these genetic tests?” B vs W: OR=0.79 (CI=0.62-1.00)
H vs W: NS
Agurs-Collins et al. 2015 Public Awareness of Direct-to-Consumer Genetic Tests: Findings from the 2013 U.S. Health Information National Trends Survey 2013 HINTS, Nationally representative sample General public N=3,185 U.S. “Genetic tests that analyze your DNA, diet, and lifestyle for potential health risks are currently being marketed by companies directly to consumers. Have you heard or read about these genetic tests?” B vs W: NS A vs W: NS AI vs W: NS NH vs W: NS H vs W: NS
Kolor et al. 2012 Public awareness and Use of Direct-to-Consumer Personal Genomic Tests from Four State Population-Based Surveys, and Implications for Clinical and Public Health Practice 2008 HealthStyles Survey, Nationally representative sample; and 2009 BRFSS in four states, representative samples General public U.S.: N=5,399 Connecticut: N=6,019 Michigan: N=5,883 Oregon: N=1,931 Utah: N=2,606 “Several companies [insert names] are advertising genetic tests that examine a person’s entire genetic makeup for health risks. You can order these tests directly, without the involvement of a healthcare provider [by swabbing the inside of your cheek and sending that sample to the company]. Have you heard or read [anything] about these tests?” B vs W: U.S.: OR=0.7 (CI=0.6-0.9) Connecticut: NS Michigan: OR=0.6 (CI=0.4-0.9) Oregon: NAd Utah: NA H vs W: U.S.: OR=0.8 (CI=0.6-0.9) Connecticut: NS Michigan: NS Oregon: NA Utah: OR=0.5 (CI=0.2-1.0)
Awareness of Personalized Medicine
Diaz et al. 2014 Racial Differences in Attitudes toward Personalized Medicine 2012 survey, Convenience sample General public and patients
N=190
South Carolina
“Have you heard of personalized medicine?” B vs W: NS
Knowledge about Genetic Tests
Singer et al. 2004 Racial and Ethnic Variations in Knowledge and Attitudes about Genetic Testing 2000 survey, Nationally representative sample plus B and H samples General public
N=1,763
U.S.
Index of seven items,e range 0 to 7 items correct:
“As far as you know, is each of the following statements about the use of genetic testing true or false, or are you not sure?”
B vs W:
Mean 3.18 vs 3.39 (p<.05)
H vs W:
Mean 2.70 vs 3.39 (p<.01)
Suther et al. 2009 Barriers to the Use of Genetic Testing: A Study of Racial and Ethnic Disparities 2000 survey, Nationally representative sample General public
N=1,724
U.S.
Index of seven items,e range 0 to 6 items correct:
“As far as you know, is each of the following statements about the use of genetic testing true, false, or are you not sure?”
B vs W:
OR=0.72
(CI=0.57-0.93)
H vs W:
OR=0.48
(CI=0.37-0.62)
a

HINTS= Health Information National Trends Survey, BRFSS=Behavioral Risk Factor Surveillance System, GSS= General Social Survey

b

W= White, NW= Non-White, B= Black/African American, H=Hispanic/Latino, C =Chinese, A =Asian, AI= American Indian/Alaska Native, NH= Native Hawaiian/Pacific Islander

c

NS= No significant

d

NA= Not available due to small sample sizes

e

Knowledge index items (correct answer in parentheses):

a. Genetic testing can be used in adults to find out if they have a greater than average chance of developing certain kinds of cancer. (True)

b. Genetic testing can be used in adults to find out if they have a greater than average chance of developing depression. (False)

c. Genetic testing can be used in adults to predict whether a person will have a heart attack. (False)

d. Genetic testing can be used during pregnancy to find out whether the baby will develop sickle cell disease or cystic fibrosis. (True)

e. Gene therapy is currently being used to correct many of the defects found through genetic testing. (False)

f. Sickle cell anemia is a genetic blood disease that affects mainly African-Americans. As far as you know, is there a cure for sickle cell anemia? (No)

g. Cystic fibrosis is a genetic disease that may lead to serious problems with breathing and digestion. As far as you know, is there a cure for cystic fibrosis? (No)