Chen Haidan
School of Health Humanities, Peking University, China.
Soc Sci Med. 2021 Aug;282:114134. doi: 10.1016/j.socscimed.2021.114134. Epub 2021 Jun 14.
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.
基于对40位参与中国北京一家医院乳腺癌生物样本库的中国乳腺癌患者的深入访谈，本文探讨了这些患者对隐私的看法。分析表明，这些患者主要将隐私视为信息隐私；他们担心联系信息、癌症诊断和基因检测结果的披露；此外，他们在不同关系和背景下对披露不同类型个人信息的看法是动态且多样的，这与中国传统的隐私观念不同。本文深入理解了这些患者为何有这样的隐私观念以及他们采取了哪些策略来应对隐私问题。接着讨论了癌症和基因检测结果披露方面的国际异同。
