TY - JOUR

T1 - Transparency, consent and trust in the use of customers' data by an online genetic testing company

T2 - an Exploratory survey among 23andMe users

AU - Raz, Aviad E.

AU - Niemiec, Emilia

AU - Howard, Heidi C.

AU - Sterckx, Sigrid

AU - Cockbain, Julian

AU - Prainsack, Barbara

N1 - 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.

PY - 2020

Y1 - 2020

N2 - 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.

AB - 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.

KW - 23andMe

KW - direct-to-consumer

KW - genetic testing

KW - participatory science

KW - transparency

UR - http://www.scopus.com/inward/record.url?scp=85085352416&partnerID=8YFLogxK

U2 - 10.1080/14636778.2020.1755636

DO - 10.1080/14636778.2020.1755636

M3 - Journal article

AN - SCOPUS:85085352416

VL - 39

SP - 459

EP - 482

JO - New Genetics and Society

JF - New Genetics and Society

SN - 1463-6778

IS - 4

ER -