Privacy in breast cancer biobank: Chinese patients' perceptions. (August 2021)

• Record Type: Journal Article
• Authors: Chen, Haidan
• Is Part Of: Social science & medicine. Volume 282(2021)
• Publication Date: 2021-08
• Subjects: Biobank -- Privacy -- Genetic testing -- Breast cancer -- Patients' perceptions -- China; Social medicine -- Periodicals; Medical anthropology -- Periodicals; Public health -- Periodicals; Psychology -- Periodicals; Medicine -- Periodicals; Medicine -- Periodicals; Médecine sociale -- Périodiques; Anthropologie médicale -- Périodiques; Santé publique -- Périodiques; Psychologie -- Périodiques; Médecine -- Périodiques; Electronic journals; 362.105
• DOI: 10.1016/j.socscimed.2021.114134
• Languages: English
• ISSNs: 0277-9536

Abstract

Abstract: Drawing on 40 in-depth interviews with Chinese breast cancer patients who participated in the breast cancer biobank at a hospital in Beijing, China, this paper explores these patients' perceptions of privacy. The analysis indicates that these patients primarily perceived privacy as informational privacy; they were concerned about the disclosure of contact information, cancer diagnosis, and genetic testing results; further, their views on disclosing different kinds of personal information were dynamic and heterogeneous in various relationships and contexts, which differs from the stereotypical beliefs of privacy in China. This paper provides situated understanding of why these patients had such privacy perceptions and what strategies they adopted to cope with their privacy. It then discusses the international similarities and differences in the disclosure of cancer and genetic testing results. Highlights: Established stereotypical beliefs regarding Chinese privacy are inappropriate. The Chinese breast cancer patients in this study perceive privacy as informational privacy. Privacy boundaries are mutable in various contexts and relations. The patients in this study demonstrate that cancer secrecy and stigma persist in China.