Duke (1)



Duke BiobankLaura M. Beskow & Colleagueshttp://biobank.duke.edu/Duke UniversityGeneral biobank. Studies of health problems to find new ways to detect, treat, prevent, cure, including studies of genes.Unrestricted.‘“Collect and store blood and health information so researchers can use them in future studies’.Patients of Duke University Health SystemUnlimited11,500Blood donation. Questionnaire (demographics and family health history). Allow continued access to medical records. Collate research data from any studies done using subject’s sample and information.Blood; Questionnaire data (family demographic and health history); Medical record dataCurrent medical record (including images as X-rays, medicines, test results). If permission given, periodically updated medical record. No mention of linkage to discard tissue, leftover samples.Access determined by a science committee at the Biobank plus ethics review. De-identified materials may be used by researchers from Duke, other universities, government, and drug-or health-related companies.Studies of health problems to find new ways to detect, treat, prevent, cure, including studies of genesIndefiniteGenerally, no individual results from research, but offer to disclose if ‘discover… info… about a disease that is likely to cause early death if not treated”. May get general news through the Biobank website.Opt in or out for: (1) Annual contact to update personal information; (2) Access to medical record from ‘time to time to get updated information’; (3) Up to two contacts per year to invite participation in specific other studies (new consents)De-identified samples and information. Researchers using samples and data sign agreement not to try to find identities. Only release information as required by law. Opt in or out for: Release of de-identified genetic and health information into scientific databases .VoluntaryOpt in or out for: (1)Annual contact to update personal information; Access to medical record from ‘time to time to get updated information’; (3) Up to two contacts per year to invite participation in specific other studies (new consents); (4) Release of de-identified genetic and health information into scientific databasesBlood draw; Risk of tracing de-identified information in scientific database back to individual since ‘genetic information is unique to you’ and that this risk may grow as new ways of tracing information are developed; Risk of tracing de-identified information in scientific database back to individual since ‘genetic information is unique to you’ and that this risk may grow as new ways of tracing information are developed.Coded sample and data; Only release information as required by law; May opt out of contributing genetic and health data to scientific databases.No direct benefits; General societal benefits.Right to withdraw at any time; If withdraw, right to tell what should be done ‘with any blood not already given out for a study”.No cost; No remuneration.No share in future profitsPhone numbers for Biobank director and Duke IRBYes, adult subjectYes. States that genetic information is unique to individualPubl 10/10http://onlinelibrary.wiley.com/doi/10.1111/cts.12287/abstract#aHR0cDovL29ubGluZWxpYnJhcnkud2lsZXkuY29tL2RvaS8xMC4xMTExL2N0cy4xMjI4Ny9wZGZAQEAwNCUSA