title: De-identified genomic data sharing: the research participant perspective.
abstract: Combining datasets into larger and separate datasets is becoming increasingly common, and personal identifiers are often removed in order to maintain participant anonymity. Views of research participants on the use of de-identified data in large research datasets are important for future projects, such as the Precision Medicine Initiative and Cancer Moonshot Initiative. This quantitative study set in the USA examines participant preferences and evaluates differences by demographics and cancer history. Study participants were recruited from the Northwest Cancer Genetics Registry and included cancer patients, their relatives, and controls. A secure online survey was administered to 450 participants. While the majority participants were not concerned about personal identification when participating in a genetic study using de-identified data, they expressed their concern that researchers protect their privacy and information. Most participants expressed a desire that their data should be available for as many research studies as possible, and in doing so, they would increase their chance of receiving personal health information. About 20% of participants felt that a link should not be maintained between the participant and their de-identified data. Reasons to maintain a link included an ability to return individual health results and an ability to support further research. Knowledge of participants' attitudes regarding the use of data into a research repository and the maintenance of a link to de-identified data is critical to the success of recruitment into future genomic research projects.
authors.affiliation: Department of Epidemiology, University of California, Irvine Hall, Irvine, CA, 92697, USA. goodmand@uci.ed.
authors.forename: Deborah
authors.identifier: http://orcid.org/0000-0003-2006-8718
authors.initials: D
authors.lastname: Goodman
authors.affiliation: Department of Public Health, University of California, Irvine, CA, USA.
authors.forename: Catherine O
authors.initials: CO
authors.lastname: Johnson
authors.affiliation: School of Public Health, University of Washington, Seattle, WA, USA.
authors.forename: Deborah
authors.initials: D
authors.lastname: Bowen
authors.affiliation: Center for Statistical Consulting, University of California, Irvine, CA, USA.
authors.forename: Megan
authors.initials: M
authors.lastname: Smith
authors.affiliation: Department of Public Health, University of California, Irvine, CA, USA.
authors.forename: Lari
authors.initials: L
authors.lastname: Wenzel
authors.affiliation: Department of Epidemiology, University of California, Irvine Hall, Irvine, CA, 92697, USA.
authors.forename: Karen
authors.initials: K
authors.lastname: Edwards
keywords: Data linkage; De-identification; Genomic research; Participant views; Precision Medicine