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Information-Seeking and Sharing Behavior Following Genomic Testing for Diabetes Risk

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

As the practice of medicine has become more patient-driven, patients are increasingly seeking health information within and outside of their doctor’s office. Patients looking for information and support are often turning to the Internet as well as family and friends. As part of a study to understand the impact of delivery method of genomic testing for type 2 diabetes risk on comprehension and health-related behaviors, we assessed participants’ information-seeking and sharing behaviors after receiving their results in-person with a genetic counselor or online through the testing company’s website. We found that 32.6 % of participants sought information after receiving the genomic test results for T2DM; 80.8 % of those that did seek information turned to the Internet. Eighty-eight percent of participants reported that they shared their T2DM risk results, primarily with their spouse/partner (65 %) and other family members (57 %) and children (19 %); 14 % reported sharing results with their health provider. Sharing was significantly increased in those who received results in-person from the genetic counselor (p = 0.0001). Understanding patients’ interests and needs for additional information after genomic testing and with whom they share details of their health is important as more information and clinical services are available and accessed outside the clinician’s office. Genetic counselors’ expertise and experience in creating educational materials and promoting sharing of genetic information can facilitate patient engagement and education.

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Acknowledgments

This work was funded by the U.S. National Institutes of Health (1R21HL096573-01A1). This study is registered in clinicaltrials.gov as # NCT01186354. The authors thank Dr. Sunil Suchindran for his assistance with data analysis.

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.

Conflict of Interests

Author R. Mills, Author J. Powell and Author W. Barry declare that they have no conflict of interest. Author S.B. Haga is a paid consultant to the non-profit Inova Translational Medicine Institute.

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  1. Duke Institute for Genome Sciences & Policy, Duke University, 304 Research Drive, Box 90141, Durham, NC, 27708, USA

    Rachel Mills, Jill Powell, William Barry & Susanne B. Haga

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  1. Rachel Mills
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  4. Susanne B. Haga
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Correspondence to Rachel Mills.

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Mills, R., Powell, J., Barry, W. et al. Information-Seeking and Sharing Behavior Following Genomic Testing for Diabetes Risk. J Genet Counsel 24, 58–66 (2015). https://doi.org/10.1007/s10897-014-9736-1

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  • DOI: https://doi.org/10.1007/s10897-014-9736-1

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