- A Systematic Literature Review of Individuals’ Perspectives on Privacy and Genetic Information in the United States
- As part of our Center focusing on understanding Genetic Privacy and Identity in Community Settings, we conducted a systematic literature review of what is already known about people’s concerns about genetic privacy in clinical care and research. We discovered that the research to date has focused primarily on concerns about downstream data users, issues of control, and whether data is revealed. Only recently have people been asked under what circumstances they might be willing to give up some privacy for another purpose. Remarkably little has been reported regarding the sociocultural factors that influence individuals’ opinions and decisions, even though these are where concerns can be addressed. Filling these gaps will be a major focus of our group’s research agenda.
- Authors of Report
- Methodology description
- We followed standard systematic review methodology including comprehensive searches of multiple databases, dual, independent screening of studies at the abstract and full text levels using a priori determined criteria; dual assessment of risk of bias; and data extraction by one investigator with checking by a second.
- This review has been published as Clayton EW, Halverson CM, Sathe NA, Malin BA. A systematic literature review of individuals' perspectives on privacy and genetic information in the United States. PLoS One. 2018 Oct 31;13(10):e0204417. doi: 10.1371/journal.pone.0204417. eCollection 2018.
Data for this project were uploaded retrospectively. Uploaded data include the study citation and key characteristics (PMID, population demographics, health condition addressed, sample size, type of privacy data included, availability of questionnaire, study quality).
- Funding Source
- National Human Genome Research Institute (NHGRI)