Transparency, consent and trust in the use of customers' data by an online genetic testing company: an Exploratory survey among 23andMe users
Research output: Contribution to journal › Journal article › Research › peer-review
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.
| Original language | English |
|---|---|
| Journal | New Genetics and Society |
| Volume | 39 |
| Issue number | 4 |
| Pages (from-to) | 459-482 |
| Number of pages | 24 |
| ISSN | 1463-6778 |
| DOIs | |
| Publication status | Published - 2020 |
Bibliographical note
Funding Information:
We wish to thank all the survey participants for their time and effort. The contribution of EN and HCH has been supported by the SIENNA project (Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact) - which has received funding under the European Union’s H2020 research and innovation program under grant agreement No 741716. This article and its contents reflect only the views of the authors and does not intend to reflect those of the European Commission. The European Commission is not responsible for any use that may be made of the information it contains.
Funding Information:
We wish to thank all the survey participants for their time and effort. The contribution of EN and HCH has been supported by the SIENNA project (Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact) - which has received funding under the European Union?s H2020 research and innovation program under grant agreement No 741716. This article and its contents reflect only the views of the authors and does not intend to reflect those of the European Commission. The European Commission is not responsible for any use that may be made of the information it contains.
Publisher Copyright:
© 2020 Informa UK Limited, trading as Taylor & Francis Group.
- 23andMe, direct-to-consumer, genetic testing, participatory science, transparency
Research areas
ID: 369539894