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Genome Med. 2015 Jan 31;7(1):10. doi: 10.1186/s13073-014-0124-0. eCollection 2015.

Associations between self-referral and health behavior responses to genetic risk information.

Author information

  • 1Division of Genetics, Brigham and Women's Hospital and Harvard Medical School, EC Alumnae Building, Suite 301, 41 Avenue Louis Pasteur, Boston, MA 02115 USA.
  • 2Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, MI 48109 USA.
  • 3Department of Epidemiology, University of Michigan School of Public Health, Ann Arbor, MI 48109 USA.
  • 4Department of Behavioral Sciences and Health Education, Rollins School of Public Health, Atlanta, GA 30322 USA.
  • 5Division of Public Health Sciences, Department of Surgery, Washington University School of Medicine, St Louis, MO 63110 USA.
  • 6Division of Genetics, Brigham and Women's Hospital/Harvard Medical School/Partners Personalized Medicine, Boston, MA 02115 USA.

Abstract

BACKGROUND:

Studies examining whether genetic risk information about common, complex diseases can motivate individuals to improve health behaviors and advance planning have shown mixed results. Examining the influence of different study recruitment strategies may help reconcile inconsistencies.

METHODS:

Secondary analyses were conducted on data from the REVEAL study, a series of randomized clinical trials examining the impact of genetic susceptibility testing for Alzheimer's disease (AD). We tested whether self-referred participants (SRPs) were more likely than actively recruited participants (ARPs) to report health behavior and advance planning changes after AD risk and APOE genotype disclosure.

RESULTS:

Of 795 participants with known recruitment status, 546 (69%) were self-referred and 249 (31%) had been actively recruited. SRPs were younger, less likely to identify as African American, had higher household incomes, and were more attentive to AD than ARPs (all P < 0.01). They also dropped out of the study before genetic risk disclosure less frequently (26% versus 41%, P < 0.001). Cohorts did not differ in their likelihood of reporting a change to at least one health behavior 6 weeks and 12 months after genetic risk disclosure, nor in intentions to change at least one behavior in the future. However, interaction effects were observed where ε4-positive SRPs were more likely than ε4-negative SRPs to report changes specifically to mental activities (38% vs 19%, p < 0.001) and diets (21% vs 12%, p = 0.016) six weeks post-disclosure, whereas differences between ε4-positive and ε4-negative ARPs were not evident for mental activities (15% vs 21%, p = 0.413) or diets (8% versus 16%, P = 0.190). Similarly, ε4-positive participants were more likely than ε4-negative participants to report intentions to change long-term care insurance among SRPs (20% vs 5%, p < 0.001), but not ARPs (5% versus 9%, P = 0.365).

CONCLUSIONS:

Individuals who proactively seek AD genetic risk assessment are more likely to undergo testing and use results to inform behavior changes than those who respond to genetic testing offers. These results demonstrate how the behavioral impact of genetic risk information may vary according to the models by which services are provided, and suggest that how participants are recruited into translational genomics research can influence findings.

TRIAL REGISTRATION:

ClinicalTrials.gov NCT00089882 and NCT00462917.

PMID:
25642295
PMCID:
PMC4311425
DOI:
10.1186/s13073-014-0124-0
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