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Transparency, consent and trust in the use of customers' data by an online genetic testing company: an Exploratory survey among 23andMe users
New Genetics and Society ( IF 1.8 ) Pub Date : 2020-05-15 , DOI: 10.1080/14636778.2020.1755636
Aviad E. Raz 1 , Emilia Niemiec 2 , Heidi C. Howard 2 , Sigrid Sterckx 3 , Julian Cockbain 4 , Barbara Prainsack 5, 6
Affiliation  

23andMe not only sells genetic testing but also uses customer data in its R&D activities and commercial partnerships. This raises questions about transparency and informed consent. Based on a online survey conducted in 2017–18, we examine attitudes of 368 customers of 23andMe toward the company's use of their data. Our findings point at divides in the context of customers' awareness of the two-sided business model of DTC genetics and their attitudes toward consent. While most of our respondents (68%) were aware that 23andMe could store their data and use it for certain purposes without their consent, over 40% were not aware that using and sharing customer data was part of the business model. Views were also divided regarding what type of consent was most appropriate. We explore the implications of these divides for participatory research and for the importance of transparency and trust in commercially-driven scientific knowledge production.

中文翻译:

在线基因检测公司使用客户数据的透明度、同意和信任:对 23andMe 用户的探索性调查

23andMe 不仅销售基因检测,还在其研发活动和商业合作伙伴关系中使用客户数据。这引发了关于透明度和知情同意的问题。根据 2017-18 年进行的在线调查,我们调查了 23andMe 的 368 位客户对公司使用其数据的态度。我们的研究结果指出,客户对 DTC 遗传学的双面商业模式的认识以及他们对同意的态度存在分歧。虽然我们的大多数受访者 (68%) 知道 23andMe 可以在未经他们同意的情况下存储他们的数据并将其用于某些目的,但超过 40% 的受访者不知道使用和共享客户数据是商业模式的一部分。关于哪种类型的同意最合适,意见也存在分歧。
更新日期:2020-05-15
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