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

Abstract

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

Testing the talented child: Direct-to-consumer genetic talent tests in China

“…To address the first question on promises made by genetic talent testing companies, I draw on materials from these companies such as marketing materials, press releases, and sample reports. I used a list of DTC-GT companies from Du and Wang (2020) and downloaded material from websites of 48 companies in May 2020. 3 Thirty-two (67%) companies were founded after 2010, and most are located in major cities such as Beijing, Shanghai, Hangzhou, and Shenzhen.…”

“…3. Du and Wang (2020) analyzed websites of 83 companies in September 2019. By May 2020, 14 websites were either broken or the companies no longer existed, 8 companies were contract research organizations that did not sell services to consumers, and 13 of these services were not mail-in products but were conducted out of brick-and-mortar labs; 48 of these were direct to consumer (DTC) in the conventional sense.…”

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“…In China, meanwhile, Du and Wang (2020) examined the measures of privacy and data protection by Chinese DTC-GT services. They concluded that the industry was mainly self-regulated and that the country needed a comprehensive legal framework for regulating DTC-GT considering its rapid spread (Du and Wang, 2020).…”

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“…It should be stressed thatcontrary to European provisionsthese Chinese instruments focus on the collective security of the community and not on protection of individuals, as evidenced also by involvement of the ministry in charge of technological development along the ministry responsible for health in preparation of the provisions. On the other hand, recent amendments to the provisions are more balanced, including protection of individuals [67], as well as for health care data protection, Chinese law also prohibits their transfer abroad (including a prohibition of storing such data on foreign servers), but still, "currently, the Chinese DTC genetic testing business is running in a regulatory vacuum, governed by self-regulation" [68].…”