Privacy and Biobanking in China: A Case of Policy in Transition

Abstract

With a population of over 1.3 billion, China is the most populous country in the world. It is facing an acute aging population problem, with a projected 440 million residents over age 60 and 101 million over age 80 by 2050. Furthermore, rapid industrialization and urbanization in China have resulted in serious air pollution and associated public health problems, including an increase in respiratory diseases and cancers. These and other demographic trends have generated concerns about the cost of health care and its impact on population health. In recent years, the Chinese government has invested heavily in the fields of translational research and biobanking with the hope that research in both fields can yield effective solutions to improve the public’s health and quality of life. The establishment of national biobanks was identified as a major initiative needed for the biomedical industry in the 12th Five-Year National Development Plan of Strategic Emerging Industries promulgated by the State Council in 2012.

Creating an Open Data City for Healthcare: A Critical Review of Data Management Strategy and Development in China

“…Research on privacy frameworks in China has become popular these days under the circumstance of calling for healthcare data sharing and openness (Chen et al, 2015). Scholars have researched the patients' willingness to share healthcare data, considering privacy protection.…”

“…Overall, there were three major aspects of open data healthcare in the context of culture. These culture-related studies on medical and health data sharing and disclosure came from different aspects, from hospitals' internal sharing (Chen et al, 2018;Li et al, 2019;Luo & Ping, 2011;Wan et al, 2012;Yin et al, 2020;Zhu, 2011) to government medical information disclosure (Lv, 2018;Ma et al, 2015;Shangguan et al, 2020;Zhang et al, 2006) and discussion on patients' privacy (Chen et al, 2015;Han et al, 2021;S. Ma et al, 2019;Xue et al, 2017;Yu et al, 2019).…”

“…This study fails to consider the influence of government management departments, platform service providers and other stakeholders on the willingness to participate in the process of healthcare data sharing (Han et al, 2021) This paper studies the protection and disclosure of patients' personal medical information from the perspective of law study This study discusses in detail the factors involved in personal privacy in the disclosure of medical information This paper only analyses the legal issues and does not establish a complete medical information disclosure system (Yang, 2017) This paper analyses the privacy and security risk factors in medical data under the background of big data This study considers healthcare data sharing in the context of big data and cloud services This study only considers the privacy issues of medical big data from the questionnaire survey data and does not provide in-depth solutions. (Lv & Qiao, 2020) This paper studies the privacy and biobanking in China in the context of policy in transition This study investigates and integrates legal issues related to the sharing of medical big data, especially on biobanks This study lacks connection with real practice cases (Chen et al, 2015)…”

Personality Rights in China’s New Civil Code: A Response to Increasing Awareness of Rights in an Era of Evolving Technology

“…Human embryos, surrogacy, organ transplantation, genetic engineering of embryos, and simulation by AI (artificial intelligence) entail fraught issues everywhere in the world. The sometimes intertwined relationship between biomedical and data risks complicates the situation further, as biological data such as fingerprints, faces, voices, and genomes are digitally collected, disseminated, and used, and are therefore subject to ever growing misuse and manipulation (Chen, Chan, and Joly, 2015).…”

Experience of Legal Regulation of Biobank Activities in Foreign Practice and the Development of Russian Legislation

“…Так, в ряде стран приняты специальные законы, регулирующие вопросы биобанкинга. В частности, такие законы приняты в Бельгии 4 , Венгрии 5 , Израиле 6 , Исландии 7 , Испании 8 , Финляндии 9 , Швеции 10 , Эстонии 11 .…”