China: concurring regulation of cross-border genomic data sharing for statist control and individual protection

Chen, Yongxi; Song, Lingqiao

doi:10.1007/s00439-018-1903-2

Cited by 19 publications

(14 citation statements)

References 15 publications

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“…Data privacy in mHealth is a major issue globally, and China has unique challenges in this regard. Some health data, such as genetic data, is already considered and regulated as property of the state [ 26 ]. China has introduced recent regulations, including the Personal Information Protection Law applying to any online data collection [ 27 ], but effective mHealth privacy regulation remains an ongoing area of development in China, as it does in many other countries [ 28 - 29 ].…”

Section: Reviewmentioning

confidence: 99%

Mobile Health Applications for Depression in China: A Systematic Review

Huang¹,

Li²,

Yang³

et al. 2022

Cureus

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Mobile health (mHealth) applications (apps) have the potential to increase access to mental health care. In China, there is growing interest in mHealth apps for depression. Our objective was to systematically review research on mHealth for depression in China to identify benefits and challenges. A systematic literature search was conducted using Chinese and English databases in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Randomized and nonrandomized clinical studies on mHealth apps and depression in China were included. Study quality was assessed using the Cochrane Risk of Bias tool. Seven studies met the inclusion criteria with three randomized trials, two quasi-randomized trials, one clinical trial with an uncertain grouping method, and one study with a single-group design. All studies used the WeChat platform and included activities such as psychoeducation, self-management, supervised group chats, and/or remote contact with a healthcare team, in comparison to usual care. All studies reported significant and large benefits for outcomes, but the risk of bias was high. There are few rigorous evaluations of mHealth apps for depression in China, with all included studies involving WeChat programs and most using WeChat to extend nursing discharge care for inpatients with depression. While these studies showed significant improvement in health outcomes as compared to usual care, the results remain inconclusive because of the high risk of bias. mHealth holds promise for increasing access to mental health care in China, but issues such as efficacy, scalability, patient and clinician acceptability, and data privacy must be addressed.

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Section: Reviewmentioning

confidence: 99%

Mobile Health Applications for Depression in China: A Systematic Review

Huang¹,

Li²,

Yang³

et al. 2022

Cureus

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“…The same aspect is even clearer in the State Council's 2016 official notice on the development and use of big data in the healthcare sector, which explicitly states that health and medical big data sets are a national resource, and that their development should be seen as a national priority to improve the nation's health . 13 From an ethical analysis perspective, the promotion of healthcare data as a public good throughout public policy-including documents such as Measures on Population Health Information and the Guiding Opinions on and Regulating the Application of Big Medical and Health Data (Chen and Song, 2018)-is crucial. This approach, combined with lax rules about data sharing within China (Liao, 2019;Simonite, 2019) (Hawkins, 2019).…”

Section: Medical Ethicsmentioning

confidence: 99%

The Chinese Approach to Artificial Intelligence: An Analysis of Policy, Ethics, and Regulation

Roberts¹,

Cowls²,

Morley³

et al. 2021

Philosophical Studies Series

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In July 2017, China's State Council released the country's strategy for developing artificial intelligence (AI), entitled 'New Generation Artificial Intelligence Development Plan' (新一代人工智能发展规划). This strategy outlined China's aims to become the world leader in AI by 2030, to monetise AI into a trillion-yuan (ca. 150 billion dollars) industry, and to emerge as the driving force in defining ethical norms and standards for AI.Several reports have analysed specific aspects of China's AI policies or have assessed the country's technical capabilities. Instead, in this article, we focus on the socio-political background and policy debates that are shaping China's AI strategy. In particular, we analyse the main strategic areas in which China is investing in AI and the concurrent ethical debates that are delimiting its use. By focusing on the policy backdrop, we seek to provide a more comprehensive and critical understanding of China's AI policy by bringing together debates and analyses of a wide array of policy documents.

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“…Personal genetic information is clearly defined as a type of biometric information and categorized as personal sensitive information (China's National Information Security Standardization Technical Committee, 2017). Different from the Cybersecurity Law, which focuses on the regulation of network security and only provides general principles for personal data protection, the Specification targeted the protection of personal information and established detailed guidelines for data compliance (Chen and Song, 2018). For example, the Specification specifies the details of the content that should be included in the privacy policy and provides a privacy policy template.…”

Section: Introductionmentioning

confidence: 99%

Genetic Privacy and Data Protection: A Review of Chinese Direct-to-Consumer Genetic Test Services

Wang

2020

Front. Genet.

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Background: The existing literature has not examined how Chinese direct-to-consumer (DTC) genetic testing providers navigate the issues of informed consent, privacy, and data protection associated with testing services. This research aims to explore these questions by examining the relevant documents and messages published on websites of the Chinese DTC genetic test providers. Methods: Using Baidu.com, the most popular Chinese search engine, we compiled the websites of providers who offer genetic testing services and analyzed available documents related to informed consent, the terms of services, and the privacy policy. The analyses were guided by the following inquiries as they applied to each DTC provider: the methods available for purchasing testing products; the methods providers used to obtain informed consent; privacy issues and measures for protecting consumers' health information; the policy for third-party data sharing; consumers right to their data; and the liabilities in the event of a data breach. Results: 68.7% of providers offer multiple channels for purchasing genetic testing products, and that social media has become a popular platform to promote testing services. Informed consent forms are not available on 94% of providers' websites and a privacy policy is only offered by 45.8% of DTC genetic testing providers. Thirtynine providers stated that they used measures to protect consumers' information, of which, 29 providers have distinguished consumers' general personal information from their genetic information. In 33.7% of the cases examined, providers stated that with consumers' explicit permission, they could reuse and share the clients' information for non-commercial purposes. Twenty-three providers granted consumer rights to their health information, with the most frequently mentioned right being the consumers' right to decide how their data can be used by providers. Lastly, 21.7% of providers clearly stated their liabilities in the event of a data breach, placing more emphasis on the providers' exemption from any liability. Conclusions: Currently, the Chinese DTC genetic testing business is running in a regulatory vacuum, governed by self-regulation. The government should develop a

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China: concurring regulation of cross-border genomic data sharing for statist control and individual protection

Cited by 19 publications

References 15 publications

Mobile Health Applications for Depression in China: A Systematic Review

Mobile Health Applications for Depression in China: A Systematic Review

The Chinese Approach to Artificial Intelligence: An Analysis of Policy, Ethics, and Regulation

Genetic Privacy and Data Protection: A Review of Chinese Direct-to-Consumer Genetic Test Services

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