Attitudes regarding privacy of genomic information in personalized cancer therapy.

Abstract

9576 Background: Cancer therapy is increasingly personalized to the molecular characteristics of a particular patient and his/her tumor. Patients and providers express interest in personalized therapy yet concerns regarding the privacy of genomic data have been raised, particularly in the context of research. We evaluated patients’ attitudes regarding privacy of genomic data. Methods: Newly registered female breast cancer patients at MD Anderson Cancer Center were invited to participate. Of 308 consecutive patients approached, 100 completed a survey assessing attitudes regarding association of personal identifying information with genomic data, risks for potential insurance and employment discrimination based on genomic information, and willingness to share genomic data (32% response rate). Results: Most patients (83%) indicated that genomic data should be protected. However, only 13% endorsed concern regarding genomic data privacy, measured using a composite scale (α= 0.92). Patients expressed more concern about insurance discrimination than employment discrimination (43% vs. 28%, p<0.001), and these two variables were highly correlated (χ2=32.7, p<0.001). Patients expressed greater trust in research institutions like MD Anderson to protect the security of their molecular data compared with government agencies or drug companies (80% vs. 63% vs. 56%; p < 0.001). Most did not endorse concern regarding association of their genomic data with their name and identities (51%), billing and insurance (56%), or clinical data (73%). Patients were more willing to share de-identified data than identified data with researchers other than their treating physicians (p<0.001). 36% of patients were willing to share identified data with any MD Anderson researcher and 14% with any cancer researcher. Conclusions: Patients generally expressed low levels of concern regarding privacy of genomic data. Cancer patients may recognize the clinical and research value of genomic testing and a significant proportion are willing to share their genomic data with researchers.