De-identified genomic data sharing: the research participant perspective. - PubMed - NCBI

De-identified genomic data sharing: the research participant perspective. - PubMed - NCBI

J Community Genet. 2017 Apr 5. doi: 10.1007/s12687-017-0300-1. [Epub ahead of print]

De-identified genomic data sharing: the research participant perspective.

Goodman D1, Johnson CO2, Bowen D3, Smith M4, Wenzel L2, Edwards K5.

Author information

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.

KEYWORDS:

Data linkage; De-identification; Genomic research; Participant views; Precision Medicine

PMID:

 

28382417

 

DOI:

 

10.1007/s12687-017-0300-1

Last Posted: Apr 13, 2017

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