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Exploring Impact of Family & Personal History on Perceived Value of Negative Genetic Test Results

This study examines the influence of family and personal history on the perceived value and usefulness of negative genetic test results. Findings show that concerns over family history did not significantly impact participants' perception of negative results.

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Exploring Impact of Family & Personal History on Perceived Value of Negative Genetic Test Results

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  1. Exploring the Impact of Family and Personal History on the Perceived Value and Usefulness of Negative Genetic Test Results eMERGE III Summer Steering Committee Meeting June 20, 2019 Sharon Aufox, MS, CGC

  2. Background • In the literature: • Focused mainly on individuals receiving positive results • Patients’ perceived value of positive results is enhanced in the presence of family or personal history of disease • Concerns raised about negative genomic results: • Providing false reassurances • Leading to unhealthy behaviors • Misunderstanding results • Our experiences: • Interviews with our NU eMERGE III participants who received negative results expressed: • Surprise • Disbelief/Disappointment • Relief/”Peace of Mind”

  3. Methods • 336 Northwestern eMERGE III participants invited via REDCap • General Northwestern Medicine patient population • Reminders sent every 2 weeks • Online survey open for 6 weeks • Questions were 5-point Likert scale, multiple choice, and T/F • Questions focused on: • Genetic knowledge • Intentions for behavior change • Usefulness of negative results • Reaction to negative results • Trust of the negative results • Willingness to undergo genetic testing in the future

  4. Self-Reported Concern about a Condition

  5. Demographics 178 completed survey (response rate of 53%) Demographic Data of Survey Respondents

  6. Genetics Knowledge • 9 True/False questions assessing genetic knowledge • 40.4% (N=72) got every question correct • “My negative genetic test result means that I will never get any medical conditions” • T= 5 (2.8%) F= 170 (95.5%) DK= 3 (1.7%) • “My negative genetic test result means that my other family members will not develop a medical condition in the future” • T= 1 (0.6%) F= 168 (94.4%) DK= 9 (5.1%) • “Environment may play a role in the development of genetic conditions” • T= 154 (86.5%) F= 14 (7.9%) DK= 10 (5.6%) T= True, F= False, DK= Don’t know

  7. Reactions to Negative Results

  8. Are the Negative Results ‘Meaningful’ to Participants?

  9. Influence on Health Decisions

  10. Usefulness of Negative Results

  11. Trust of Negative Results

  12. Future Genetic Testing

  13. Conclusions • In our population, concerns over family history or personal history of a medical condition did not appear to influence the perceived usefulness or value of negative results compared to those who had no personal or family medical concerns • Majority were not frustrated or disappointed by receiving negative genetic results • Majority of participants found some meaning with their negative results • Negative results did not seem to influence health-related decisions • Majority still would undergo genetic testing in the future • Majority of participants still trusted their results even though it did not explain their family or personal history of a medical condition

  14. Limitations • Small number of participants • Highly educated • Minority populations not well represented

  15. Thank You! • Sinead Horgan, MS • Maureen Smith, MS, CGC • Christie Hoell, MS, CGC • Carmen Williams, MS, CGC

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