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.
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Acknowledgments
The authors wish to thank the individuals enrolled in the NWCGR for their ongoing participation in and contribution to cancer research. They also acknowledge and thank Lesley Pfeiffer, Anne Renz, Joan Scott, and David Kaufmann for their work contributing to the earlier stages of this project.
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This research was supported by NIH grant no. R01CA149051 to Karen Edwards (PI), “Identification of Issues and Expectations of Subjects Participating in Genetic Studies of Cancer”.
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The authors declare that they have no conflict of interest.
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. All study procedures were approved by the University of Washington’s Human Subjects Division, and also by the University of California, Irvine Institutional Review Board.
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Informed consent was obtained from all individual participants included in the study.
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Goodman, D., Johnson, C.O., Bowen, D. et al. De-identified genomic data sharing: the research participant perspective. J Community Genet 8, 173–181 (2017). https://doi.org/10.1007/s12687-017-0300-1
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DOI: https://doi.org/10.1007/s12687-017-0300-1