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Genomic privacy? : Direct-to-consumer genetic testing companies and the processing of sensitive personal data

Magaard, Simone ; Markus, Daniel and Klareld, Ann-Sofie LU (2023) In Tidskrift för ABM 8(1). p.31-56
Abstract
This paper explores the processing of sensitive personal data for genealogical purposes by studying how the privacy policies of three direct-to-consumer genetic testing companies relate to the general Data Protection Regulation (GDPR). The methodological approach is content analysis. The privacy policies are analysed in relation to the three core principles of 1) adherence to GDPR; 2) transparent processing of personal data; and 3) consent. The paper also discusses privacy in relation to third parties whose sensitive personal data is processed indirectly due to the nature of DNA as shared between family members. The main result is that the privacy policies rarely mention GDPR; when mentioned it is done in a brief way; the privacy policies... (More)
This paper explores the processing of sensitive personal data for genealogical purposes by studying how the privacy policies of three direct-to-consumer genetic testing companies relate to the general Data Protection Regulation (GDPR). The methodological approach is content analysis. The privacy policies are analysed in relation to the three core principles of 1) adherence to GDPR; 2) transparent processing of personal data; and 3) consent. The paper also discusses privacy in relation to third parties whose sensitive personal data is processed indirectly due to the nature of DNA as shared between family members. The main result is that the privacy policies rarely mention GDPR; when mentioned it is done in a brief way; the privacy policies studied convey insufficient transparency as regards data processing; and genetic relatives of users are not taken into consideration even though their personal data is being processed indirectly. (Less)
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author
; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Tidskrift för ABM
volume
8
issue
1
pages
34 pages
publisher
Uppsala universitet
ISSN
2002-4614
DOI
10.33063/tabm.v8i1.347
language
English
LU publication?
yes
id
545b62dd-ad98-4981-8c8b-598c04c52c65
date added to LUP
2022-04-21 10:12:25
date last changed
2024-01-26 09:37:42
@article{545b62dd-ad98-4981-8c8b-598c04c52c65,
  abstract     = {{This paper explores the processing of sensitive personal data for genealogical purposes by studying how the privacy policies of three direct-to-consumer genetic testing companies relate to the general Data Protection Regulation (GDPR). The methodological approach is content analysis. The privacy policies are analysed in relation to the three core principles of 1) adherence to GDPR; 2) transparent processing of personal data; and 3) consent. The paper also discusses privacy in relation to third parties whose sensitive personal data is processed indirectly due to the nature of DNA as shared between family members. The main result is that the privacy policies rarely mention GDPR; when mentioned it is done in a brief way; the privacy policies studied convey insufficient transparency as regards data processing; and genetic relatives of users are not taken into consideration even though their personal data is being processed indirectly.}},
  author       = {{Magaard, Simone and Markus, Daniel and Klareld, Ann-Sofie}},
  issn         = {{2002-4614}},
  language     = {{eng}},
  month        = {{12}},
  number       = {{1}},
  pages        = {{31--56}},
  publisher    = {{Uppsala universitet}},
  series       = {{Tidskrift för ABM}},
  title        = {{Genomic privacy? : Direct-to-consumer genetic testing companies and the processing of sensitive personal data}},
  url          = {{http://dx.doi.org/10.33063/tabm.v8i1.347}},
  doi          = {{10.33063/tabm.v8i1.347}},
  volume       = {{8}},
  year         = {{2023}},
}