Patient knowledge and information-seeking about personalized cancer therapy.

BACKGROUND: Understanding patients' knowledge and prior information-seeking regarding personalized cancer therapy (PCT) may inform future patient information systems, consent for molecular testing and PCT protocols. We evaluated breast cancer patients' knowledge and information-seeking behaviors regarding PCT. METHODS: Newly registered female breast cancer patients (n=100) at a comprehensive cancer center completed a self-administered questionnaire prior to their first clinic visit. RESULTS: Knowledge regarding cancer genetics and PCT was moderate (mean 8.7±3.8 questions correct out of 16). A minority of patients (27%) indicated that they had sought information regarding PCT. Higher education (p=0.009) and income levels (p=0.04) were associated with higher knowledge scores and with seeking PCT information (p=0.04). Knowledge was not associated with willingness to participate in PCT research. CONCLUSION: Educational background and financial status impact patient knowledge as well as information-seeking behavior. For most patients, clinicians are likely to be patients' initial source of information about PCT. Understanding patients' knowledge deficits at presentation may help inform patient education efforts.

Attitudes regarding privacy of genomic information in personalized cancer therapy.

OBJECTIVE: To evaluate attitudes regarding privacy of genomic data in a sample of patients with breast cancer. METHODS: Female patients with breast cancer (n=100) completed a questionnaire assessing attitudes regarding concerns about privacy of genomic data. RESULTS: Most patients (83%) indicated that genomic data should be protected. However, only 13% had significant concerns regarding privacy of such data. Patients expressed more concern about insurance discrimination than employment discrimination (43% vs 28%, p<0.001). They expressed less concern about research institutions protecting the security of their molecular data than government agencies or drug companies (20% vs 38% vs 44%; p<0.001). Most did not express concern regarding the association of their genomic data with their name and personal identity (49% concerned), billing and insurance information (44% concerned), or clinical data (27% concerned). Significantly fewer patients were concerned about the association with clinical data than other data types (p<0.001). In the absence of direct benefit, patients were more willing to consent to sharing of deidentified than identified data with researchers not involved in their care (76% vs 60%; p<0.001). Most (85%) patients were willing to consent to DNA banking. DISCUSSION: While patients are opposed to indiscriminate release of genomic data, privacy does not appear to be their primary concern. Furthermore, we did not find any specific predictors of privacy concerns. CONCLUSIONS: Patients generally expressed low levels of concern regarding privacy of genomic data, and many expressed willingness to consent to sharing their genomic data with researchers.