title: Tensions between anonymity and thick description when "studying up" in genetics research.
abstract: Anonymity, according to Tilley and Woodthorpe, refers to removing or obscuring participant information, whereas "confidentiality refers to the management of private information." Both are major considerations for ethics review boards, but can be challenges when "studying up" in qualitative research because of the depth, precision, and uniqueness of the information, and the prominence of research participants. In anthropology, providing detailed and nuanced accounts of particular spaces, events, and conditions is essential. Actions taken to hide or gloss over these particulars would impede the ability to demonstrate authenticity, validity, and verisimilitude. As social science moves into field sites such as cutting-edge genomics, where when studying up, participants through their particular contributions might be identified, strategies to decrease the friction between descriptive methodologies and the requirement for anonymity need to be developed. We conclude with recommendations for researchers and members of research ethics boards regarding how to anticipate and mitigate this tension.
authors.affiliation: Laurentian University, Greater Sudbury, Ontario, Canada.
authors.forename: Julia
authors.initials: J
authors.lastname: Bickford
authors.affiliation: University of Western Ontario, London, Ontario, Canada jeff.nisker@lhsc.on.ca.
authors.forename: Jeff
authors.initials: J
authors.lastname: Nisker
mesh_terms: D003219:Confidentiality / Q000592:standards*; D028744:Ethics Committees, Research; D036281:Genetic Research / Q000941:ethics*; D006801:Humans; D036301:Qualitative Research
keywords: anthropology; confidentiality / privacy; ethics / moral perspectives; ethnography; genetics; research, qualitative