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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

Raz, Aviad E. ; Niemiec, Emilia LU orcid ; Howard, Heidi C. LU ; Sterckx, Sigrid ; Cockbain, Julian and Prainsack, Barbara (2020) In New Genetics and Society p.1-24
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... (More)

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.

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author
; ; ; ; and
publishing date
type
Contribution to journal
publication status
published
subject
keywords
23andMe, direct-to-consumer, genetic testing, participatory science, transparency
in
New Genetics and Society
pages
1 - 24
publisher
Taylor & Francis
external identifiers
  • scopus:85085352416
ISSN
1463-6778
DOI
10.1080/14636778.2020.1755636
language
English
LU publication?
no
id
e4c658ec-b6c7-4ff5-af2f-633c4f6d2678
date added to LUP
2020-12-03 13:59:44
date last changed
2022-04-26 22:21:00
@article{e4c658ec-b6c7-4ff5-af2f-633c4f6d2678,
  abstract     = {{<p>23andMe not only sells genetic testing but also uses customer data in its R&amp;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.</p>}},
  author       = {{Raz, Aviad E. and Niemiec, Emilia and Howard, Heidi C. and Sterckx, Sigrid and Cockbain, Julian and Prainsack, Barbara}},
  issn         = {{1463-6778}},
  keywords     = {{23andMe; direct-to-consumer; genetic testing; participatory science; transparency}},
  language     = {{eng}},
  pages        = {{1--24}},
  publisher    = {{Taylor & Francis}},
  series       = {{New Genetics and Society}},
  title        = {{Transparency, consent and trust in the use of customers' data by an online genetic testing company : an Exploratory survey among 23andMe users}},
  url          = {{http://dx.doi.org/10.1080/14636778.2020.1755636}},
  doi          = {{10.1080/14636778.2020.1755636}},
  year         = {{2020}},
}