Personalized Health Care Initiative Workshop: "Understanding the Needs of Consumers in the Use of Genome-based Health Information Services". Key Takeaways

07/07/2008

  • Familiarity with the concept of genetic testing is limited.
    • The majority of consumers say they have heard of genetic testing, but do not know much about it.
      • Most can provide a definition for genetic testing, but aren't sure what it involves, how the information is used, what the results would look like, or how much it would cost.
      • For many, they have neutral opinions about the genetic testing because they feel they don't know enough to fully evlauate it.
    • Consumers are largely unaware genetic testing information companies exist that provide services via the Internet.
  • The healthcare professional is desired - and assumed to be - involoved in the infomration gathering, testing, and analysis processes.
  • Most consumers say they would consider genetic testing, especially for conditions where they could affect their future risk by taking action.
  • Though most are able to define what genetic testing is, consumer knowledge drops off around how genetic testing information is used.
    • Most are open to genetic tests being perfomred, but have concerns about "what happens next?"

Hopes

  • Understanding disease risk
  • taking preventative steps
  • Planning for the future

Concerns

Ability to understand results:

  • Delivery of information
  • Interpretation/explanation of results

Actions taken after testing:

  • Risk of discrimination
  • Religious /Ethical decisions(e.g., abortion)

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