Abstract P4-11-03: Single nucleotide polymorphism testing for breast cancer risk assessment: patient trust and willingness to pay

Abstract

Abstract Background: The field of breast cancer risk assessment is advancing rapidly with recent discoveries about risk conferring single nucleotide polymorphisms (SNPs). While these discoveries can promote personalized medicine, they are often brought to the market with direct to consumer (DTC) testing before data can support their widespread use and before reliable options for dealing with testing outcomes can be offered. In this context, and knowing that patients often misunderstand risk information, it is unclear how patients will respond to these options. Methods: We surveyed high risk women's interest in SNP testing. Participants were recruited from the Cancer Genetics Network (CGN), a national network of cancer centers that maintains a database of individuals with a family history of cancer. Participants were asked to answer questions regarding their interest in SNP testing including: whether they trust it, how much they would be willing to pay for testing, how they prefer to be tested, and how they would proceed with information identifying them as below or above average risk. Results: 189 women without a history of breast cancer or SNP testing completed the questionnaire. The average age of the participants was 49, ranging from 30 to 65. All participants had at least one relative with breast or ovarian cancer. 13% had previously tested positive for a BRCA mutation, and 33% had received BRCA testing. Most women (90%) did not know what SNP testing was prior to the survey. Once SNP testing was described, 68% of women were interested in DTC SNP testing; at the same time, only 38% of the participants reported that they trusted DTC SNP testing. Conclusion: While our results show that women are interested in DTC SNP testing, their willingness to pay is lower than the DTC cost (∼$300). Involvement of genetic counselors and providers in SNP testing discussions may be needed to overcome the current lack of trust of DTC testing among patients. Many women showed interest in lifestyle interventions, suggesting that these interventions should be incorporated as part of standard follow-up recommendations. When identified by SNP testing as “below average” risk, women do not seem to trust the results enough to forego regular mammograms. As DTC testing becomes more common, and as more SNP tests become available, it will be necessary for the medical community to address patients' interest in these tests and to assist in interpreting results. Citation Information: Cancer Res 2012;72(24 Suppl):Abstract nr P4-11-03.