Det genetiska arkivet : en undersökning av DNA-företags hantering av känsliga personuppgifter i relation till dataskyddsförordningen
(2021) ABMM34 20211Division of ALM and Digital Cultures
- Abstract
- The aim of this thesis is to widen the research field of archival law in relation to the new technological opportunities that have been created regarding personal information such as DNA. This is done by the study of the three most influential and popular biotechnical companies that are currently offering their services in Sweden. The material used to achieve this aim is GDPR and the privacy statements of the companies. The connection between these biotechnical companies and archives might not be apparent at first sight, but we argue that they are to be interpreted as forms of digital archives due to their storing of their customers' personal information in organised manners. The theoretical framework of our thesis is based on GDPR. It is... (More)
- The aim of this thesis is to widen the research field of archival law in relation to the new technological opportunities that have been created regarding personal information such as DNA. This is done by the study of the three most influential and popular biotechnical companies that are currently offering their services in Sweden. The material used to achieve this aim is GDPR and the privacy statements of the companies. The connection between these biotechnical companies and archives might not be apparent at first sight, but we argue that they are to be interpreted as forms of digital archives due to their storing of their customers' personal information in organised manners. The theoretical framework of our thesis is based on GDPR. It is not a typically established theory but something designed by ourselves. Through this theory we perceive GDPR through four primary themes which are principles, application, personal information and processing. From these we derive questions that can be posed in relation to the privacy statements mentioned previously. To complement the theory we have chosen hermeneutics as our methodological approach, whereby we study GDPR and the privacy statements of the biotechnological companies to gain deeper insights regarding their meanings. Our main result is that companies very seldomly mention GDPR, and when it is done it is done very poorly, creating a situation for users where they never can be entirely certain what to expect from the companies because their policy can change at any time. Also, despite GDPR it seems difficult to protect the integrity of the citizens of the European Union from non-european companies with economic interests and activity within the union. Lastly, while the users themselves can choose to consent or not to the use of their personal information, the genetic relatives of the user are not taken into consideration despite the fact that their information also is being shared indirectly. (Less)
Please use this url to cite or link to this publication:
http://lup.lub.lu.se/student-papers/record/9049852
- author
- Magaard, Simone LU and Markus, Daniel LU
- supervisor
- organization
- alternative title
- The genetic archive : a review of the handling of sensitive personal information by biotechnical companies in relation to GDPR
- course
- ABMM34 20211
- year
- 2021
- type
- H2 - Master's Degree (Two Years)
- subject
- keywords
- DNA, DNA companies, biotechnology companies, genetic data, GDPR, General Data Protection Regulation, the European Union, Ancestry, MyHeritage, FamilyTreeDNA, archival science, archive, digital archives, archival law, personal information, integrity.
- language
- Swedish
- id
- 9049852
- date added to LUP
- 2021-08-24 11:26:45
- date last changed
- 2021-08-24 11:26:45
@misc{9049852,
abstract = {{The aim of this thesis is to widen the research field of archival law in relation to the new technological opportunities that have been created regarding personal information such as DNA. This is done by the study of the three most influential and popular biotechnical companies that are currently offering their services in Sweden. The material used to achieve this aim is GDPR and the privacy statements of the companies. The connection between these biotechnical companies and archives might not be apparent at first sight, but we argue that they are to be interpreted as forms of digital archives due to their storing of their customers' personal information in organised manners. The theoretical framework of our thesis is based on GDPR. It is not a typically established theory but something designed by ourselves. Through this theory we perceive GDPR through four primary themes which are principles, application, personal information and processing. From these we derive questions that can be posed in relation to the privacy statements mentioned previously. To complement the theory we have chosen hermeneutics as our methodological approach, whereby we study GDPR and the privacy statements of the biotechnological companies to gain deeper insights regarding their meanings. Our main result is that companies very seldomly mention GDPR, and when it is done it is done very poorly, creating a situation for users where they never can be entirely certain what to expect from the companies because their policy can change at any time. Also, despite GDPR it seems difficult to protect the integrity of the citizens of the European Union from non-european companies with economic interests and activity within the union. Lastly, while the users themselves can choose to consent or not to the use of their personal information, the genetic relatives of the user are not taken into consideration despite the fact that their information also is being shared indirectly.}},
author = {{Magaard, Simone and Markus, Daniel}},
language = {{swe}},
note = {{Student Paper}},
title = {{Det genetiska arkivet : en undersökning av DNA-företags hantering av känsliga personuppgifter i relation till dataskyddsförordningen}},
year = {{2021}},
}