In 2000, researchers at the University of Michigan Institute for Social Research conducted a national survey on Americans' knowledge, attitudes, values and behavior regarding genetic testing and compared results to public opinion surveys from 1990. The survey also examined the views of African Americans, Hispanics and non-Hispanic whites.

In addition, project staff convened the "Conference on Genetics and Health Disparities" in March 2004 at the University of Michigan.

Key Findings

Singer, Antonucci and John Van Hoewyk reported survey findings on differences in knowledge and attitudes about genetic testing among African Americans, Hispanics and non-Hispanic whites in an article, "Racial and Ethnic Variations in Knowledge and Attitudes about Genetic Testing," published in Genetic Testing in 2004, and in a report to RWJF:

• Similar percentages (about 65 percent) of African Americans and whites would want a genetic test for a treatable disease, but larger percentages of African Americans (58 percent) and Hispanics (61 percent) would seek a test for an untreatable disease than would whites (43 percent).
• Despite their interest in genetic testing, African Americans' concerns about privacy and lack of confidence in institutions and trust in their doctors may discourage them from seeking such tests.
• Hispanic respondents differ less from non-Hispanic whites respondents than African-American respondents do.
• Religious factors may play a role in reducing both African Americans' and Hispanics' use of genetic testing.

The researchers also compared public attitudes toward genetic testing in 2000 versus 1990 in a 2005 article in the International Journal of Public Opinion Research entitled "U.S. Attitudes Toward Genetic Testing, 1990–2000," which included the following findings:

• The ability of genetic testing to diagnose a greater number of fetal conditions and defects in 2000 than in 1990 has not resulted in an increased preference for prenatal testing.
• Preference for abortion in the case of fetal defect decreased significantly between 1990 and 2000.

Funding

Between 1997 and 2004, the Robert Wood Johnson Foundation (RWJF) provided two unsolicited grants totaling $505,315 in support of the project.