Abstract
Genetic counselors are uniquely positioned to discuss the option of DNA banking with patients. Personal DNA banking, a means of storing DNA for future analysis, may benefit the depositor or the depositor’s family. To date, research has primarily focused on consumer views of other types of medical banking (such as cord blood banking) and consumer opinions regarding genetic testing and/or research. The aim of this study was to assess genetic counseling practices regarding the discussion of DNA banking with patients. We recruited genetic counselors through the National Society of Genetic Counselors (NSGC) and the NSGC Cancer SIG listservs to complete an anonymous, online survey consisting of 46 multiple-choice, scaled, and open-ended questions. We presented the respondents with scenarios and asked them to indicate the likelihood they would discuss the option of DNA banking. We received 171 completed surveys, of which 46 surveys had responses for prenatal scenarios, 51 for pediatric, and 104 for cancer. Our results suggest that DNA banking is not consistently discussed with patients. Counselors were more likely to discuss DNA banking with patients who: had multiple miscarriages or an earlier gestation loss in the prenatal setting; are suspected to have a syndrome, are expected to pass away, or had a negative test result for a test with a detection rate less than 100% in the pediatric setting; have a poor prognosis, are concerned for family members, or have not undergone testing in the cancer setting. Only twenty-seven respondents (15.8%) reported they received training regarding DNA banking in graduate school and only 12 individuals (7%) reported their current or previous employer provided a specific protocol regarding appropriate situations to discuss DNA banking with patients. These results suggest the need for training regarding DNA banking and the generation of guidelines for genetic counselors and other non-genetics health care professionals.