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

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.

Does personalized melanoma genomic risk information trigger conversations about skin cancer prevention and skin examination with family, friends and health professionals?

“…Almost half of the participants in our study (49%) discussed their risk information with friends. In a study of information‐seeking and ‐sharing behaviour following genomic testing for type 2 diabetes among 300 participants, 41% shared their risk information with a close friend . Communicating with friends is important to skin cancer prevention behaviours, which have been linked to social and cultural norms, such as valuing the appearance of tanned skin .…”

“…In a study of informationseeking and -sharing behaviour following genomic testing for type 2 diabetes among 300 participants, 41% shared their risk information with a close friend. 28 Communicating with friends is important to skin cancer prevention behaviours, which have been linked to social and cultural norms, such as valuing the appearance of tanned skin. 29 Adults with positive attitudes towards sun-safe behaviour are likely to perceive their friends' approval and support of these behaviours, 30 and preventive behaviours, particularly in young Australians, are influenced by their friends' attitudes and beliefs.…”

Counselees’ Perspectives of Genomic Counseling Following Online Receipt of Multiple Actionable Complex Disease and Pharmacogenomic Results: a Qualitative Research Study

“…Results from this study provide a number of key into insights regarding participant expectations and desired effects from genomic counseling and illustrate the need for a more participant-driven model of GC. These results provide an important vantage point to further develop models of counseling service delivery for actionable genomic based on results received online (Kaphingst et al, 2012; Mills et al, 2014; Simmons et al, 2014). …”

“…This transition does not replace the vital work on risk assessment and counseling for single gene (Mendelian) diseases, but builds upon it through careful integration of polygenic and environmental risk information for multiple disease risk indications. The complexity of genomic information lends itself to innovative approaches that have the potential to make GC more accessible and efficient, such as online web portals providing high-quality education and support in a more participatory and less healthcare provider time-intensive fashion (Haga et al, 2014; Mills, Powell, Barry, & Haga, 2014; Ormond, 2013; Trepanier & Allain, 2014). This more participatory approach has several benefits including meeting patients desire to be engaged in their health care, and leading to improvements in health outcomes (Simmons, Wolever, Bechard, & Snyderman, 2014).…”

A Qualitative Study of Anticipated Decision Making around Type 2 Diabetes Genetic Testing: the Role of Scientifically Concordant and Discordant Expectations

“…Several clinical trials (Centre d'Etudes et de Recherche pour l'Intensification du Traitement du Diabète, 2012; David Grant U.S. Air Force Medical Center & Duke University, 2000; Proove Bioscience, Inc., 2015) and other studies have already been initiated to measure the clinical value of T2DM genetic/familial risk assessment and to develop best practices around genetic counseling (Grant, Hivert, Pandiscio, Florez, Nathan, & Meigs, 2009; Mills, Powell, Barry, & Haga, 2015; Nishigaki et al, 2007; Nishigaki, Sato, Ochiai, Shibayama, & Kazuma, 2011; Nishigaki, Tokunaga-Nakawatase, Nishida, & Kazuma, 2014; Vassy, Donelan, Hivert, Green, & Grant, 2013; Voils et al, 2015). To date, the results of these studies have been discouraging, concluding that T2DM genetic testing as it currently exists is not a promising clinical tool.…”