Personalized Health Care Initiative Workshop: "Understanding the Needs of Consumers in the Use of Genome-based Health Information Services". Personal Interest in Genetic Testing

07/07/2008

  • Consumers want to know about their disease risk, particularly if they could take steps to lower their risk.
    • While interest was lower for learning risk for diseases for which there was no action, the majority were still interested.
    • Interest was lowest in non-health related information.
Personal Interest in Genetic Testing
Which of the following types of personal genetic information would you be interested in?: Information that tells you.....
Your risk for a specific disease (with or without your doctor knowing) 89%
Your risk for a disease that you could do something about-- that is, by knowing that you are at risk you could alter the onset of the disease by using a medical intervention or making lifestyle changes 100%
Your risk for a disease you could not do something about---that is, even knowing your risk you could not do anything to change your risk level, but it might influence your life decisions (such as having children or retirement planning) 67%
Your ancient ancestors (which portion of your DNA that came from a particular region of the world) 44%
Your physical traits (such as eye and hair color, type of earwax, height, caffeine metabollism, baldness, or odor detection) 67%
  • Consumers were most interested in personal testing for cancer and heart disease.
    • The general sentiment was that they would want testing for more "serious" diseases.
    • In contrast, few saw need for testing for obesity because it was "about personal control" and "I can just look at myself to know"
  • None of the participants in this study had undergone genetic testing for any reason, though several knew children who had been tested.
Personal Interest in Genetic Testing (2)
Which of the following health conditions would you consider getting genetic testing for (or have been tested for) in order to determine if you are at increased risk?
Cancer 100%
Heart Disease 78%
Diabetes 67%
Alzheimers 44%
A mental health condition (e.g. depresssion) 22%
Obesity 22%

Genetic Testing & Family

  • Consumers say that they would want to share genetic testing information with family members if those individuals might be at risk
  • Likewise, they would want family members to tell them if they discovered an above-average risk.
Genetic Testing & Family
Mean, with scale: 1 (Strongly Disagree) to 6 (Strongly Agree)
If I took a genetic test and discovered I had a higher-than-normal genetic risk for a disease, I would tell my family because they might have the same risk. 5.3
If a family member discovered that they had a higher-than normal genetic risk, I would want them to tell me. 5.7

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