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United States Public Knowledge and Attitudes About Genetic Testing, 2000

Resource Type
Dataset : survey data
  • Singer, Eleanor (University of Michigan)
  • Antonucci, Toni (University of Michigan)
Other Title
  • Archival Version (Subtitle)
Publication Date
Funding Reference
  • Robert Wood Johnson Foundation
Free Keywords
attitudes; disease; genetics; knowledge (awareness); medical technology; prenatal care; risk factors; testing and measurement
  • Abstract

    The primary goal of this national survey was to assess knowledge, attitudes, and behavior regarding genetic testing in humans. The survey gauged respondents' knowledge of which genetic defects can be detected by the prenatal testing of a fetus, whether genetic testing can predict heart attacks or detect a tendency to develop depression and certain types of cancer, and whether gene therapy can be used to correct many of the defects discovered through gene testing. Attitudes toward prenatal genetic testing were examined, including preferences for abortion in case of fetal defect, as well as attitudes toward genetic testing of adults, genetic testing in the workplace, and other aspects of genetic testing. Respondents reported whether they or their partner ever had a prenatal genetic test or received counseling for a prenatal test, their reasons for deciding to have or not have a test, and whether anything happened to the pregnancy as result of a test, e.g., abortion. In addition, respondents were asked if they ever had themselves tested for a genetic disease or received counseling for such tests, for which conditions they were tested, whether they tested positive or negative, with whom they shared the test results, and whether they lost a job, lost health or life insurance, or had their insurance premiums increased as a result of being tested. Sources of information for news about science or health, trust in doctors to keep medical information private, and confidence in the people running the government and corporations that make and sell genetic tests constitute some of the other topics covered by the survey. Background variables include sex, age, race, Hispanic origin, employment status, union membership, religious preference, religiosity, disability status and type of disability, health insurance coverage, state and geographic region of residence, income, and education.
  • Table of Contents


    • DS1: Dataset
Temporal Coverage
  • Time period: 2000
  • Collection date: 2000
Geographic Coverage
  • United States
Sampled Universe
Adults ages 18 and over residing in households with telephones within the contiguous United States.
Households were selected using a list-assisted plus one random-digit dialing frame. In each selected household, respondents were randomly chosen using a household roster. Blacks and Latinos were oversampled.
Collection Mode
  • The codebook is provided by ICPSR as a Portable Document Format (PDF) file. The PDF file format was developed by Adobe Systems Incorporated and can be accessed using PDF reader software, such as the Adobe Acrobat Reader. Information on how to obtain a copy of the Acrobat Reader is provided on the ICPSR Web site.

2005-02-03 Variable AREA, which identifies the respondent's state, has been added to the collection as a restricted-use variable. Funding insitution(s): Robert Wood Johnson Foundation (035311).
One or more files in this study are not available for download due to special restrictions; consult the study documentation to learn more on how to obtain the data.
Alternative Identifiers
  • 3904 (Type: ICPSR Study Number)
  • Is previous version of
    DOI: 10.3886/ICPSR03904.v1
  • Campbell, Richard T., Berbaum, Michael L.. Analysis of data from complex surveys. Handbook of Survey Research, 2nd Edition.Bingley, UK: Emerald Group Publishing Limited. 2010.
  • Suther, Sandra, Kiros, Gebre-Egziabher. Barriers to the use of genetic testing: A study of racial and ethnic disparities. Genetics in Medicine.11, (9), 655-662.2009.
    • ID: 10.1097/GIM.0b013e3181ab22aa (DOI)
  • Singer, Eleanor, Antonucci, Toni, Van Hoewyk, John. Racial and ethnic variations in knowledge and attitudes about genetic testing. Genetic Testing.8, (1), 31-43.2004.
    • ID: 10.1089/109065704323016012 (DOI)

Update Metadata: 2015-08-05 | Issue Number: 8 | Registration Date: 2015-06-15

Singer, Eleanor; Antonucci, Toni (2004): United States Public Knowledge and Attitudes About Genetic Testing, 2000. Archival Version. Version: v0. ICPSR - Interuniversity Consortium for Political and Social Research. Dataset.