Personalized Health Care Initiative Workshop: "Understanding the Needs of Consumers in the Use of Genome-based Health Information Services". Background, Objectives and Methodology

07/07/2008

Background

  • The Department of Health and Human Services(HHS), Office of the Assistant Secretary for Planning and Evaluation(ASPE) is holding a workshop called "Understanding the Interest and Needs of Consumers in the Use of Genome-based Health Information Services" to discuss consumer demand for an interest in services that provide genetic testing/screening.
  • This workshop will include major stakeholders in the field of genomics, including clinicians, genetic counselors, and consumer advocates. In order to provide specific consumer response to this issue, TSC a division of Yankelovich conducted qualitative primary research on the topic.

Objectives

In a qualitative fashion, the research answers the following key questions related to attitudes toward genetic testing among consumers:

  • Awareness & Understanding of Genetic Testing
    • What do consumers know about genetic testing?
      • How do they define genetic testing?
      • What words/concepts do they associate with the concept?
      • Is their overall evaluation of genetic testing positive or negative?
    • In what circumstances do they see genetic testing being used?
      • Who wants/needs testing? Why? Where?
    • How knowledgeable are they about online genetic testing sites?
  • Personal Interest in Genetic Testing
    • What is the level of personal interest in testing?
      • And Why?
    • How would they react to positive /negative results?
  • Concerns about Genetic Testing
    • What are the biggest concerns consumers have about genetic testing?

Methodology

  • Interview Format: 90-minute in-depth interviews with consumers
  • Sample: Total of 9 consumers interviewed
    • Interviews were conducted in Raleigh, NC on June 25, 2008.
    • A diverse group of consumers (age, gender, education, HH income) were interviewed
  • Qualitative Research Caveat
    • As with all qualitative research, these findings are based on a limited number of consumers. No assurances can be made that their attitudes and behaviors are projectable to the US population of consumers.
    • Accordingly, the use of the terms "many," "majority." "some," etc., in this report should be interpreted directionally, with the understanding that they are descriptive of the study sample.

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