Transparency, consent and trust in the use of customers' data by an online genetic testing company: an Exploratory survey among 23andMe users

IF 1.3 4区医学 Q4 BIOTECHNOLOGY & APPLIED MICROBIOLOGY

New Genetics and Society Pub Date : 2020-05-15 DOI:10.1080/14636778.2020.1755636

Aviad E. Raz, E. Niemiec, H. Howard, S. Sterckx, Julian Cockbain, B. Prainsack

引用次数: 16

Abstract

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.

查看原文本刊更多论文

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

23andMe不仅销售基因检测，还在研发活动和商业合作中使用客户数据。这引发了关于透明度和知情同意的问题。根据2017-18年进行的一项在线调查，我们研究了23andMe的368名客户对公司使用其数据的态度。我们的研究结果指出，在客户对DTC基因的双边商业模式的认识和他们对同意的态度方面存在分歧。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。对于哪种类型的同意是最适当的，意见也有分歧。我们探讨了这些分歧对参与性研究的影响，以及在商业驱动的科学知识生产中透明度和信任的重要性。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文求助全文

来源期刊

New Genetics and Society 生物-生物工程与应用微生物

CiteScore

4.30

自引率

16.70%

发文量

审稿时长

>12 weeks

期刊介绍： New Genetics and Society: Critical Studies of Contemporary Biosciences is a world-leading journal which: -Provides a focus for interdisciplinary and multi-disciplinary, leading-edge social science research on the new genetics and related biosciences; -Publishes theoretical and empirical contributions reflecting its multi-faceted development; -Provides an international platform for critical reflection and debate; -Is an invaluable research resource for the many related professions, including health, medicine and the law, wishing to keep abreast of fast changing developments in contemporary biosciences. New Genetics and Society publishes papers on the social aspects of the new genetics (widely defined), including gene editing, genomics, proteomics, epigenetics and systems biology; and the rapidly developing biosciences such as biomedical and reproductive therapies and technologies, xenotransplantation, stem cell research and neuroscience. Our focus is on developing a better understanding of the social, legal, ethical and policy aspects, including their local and global management and organisation.