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Genetic classes and genetic categories: Protecting genetic groups through data protection law

: Hallinan, Dara; Hert, Paul de


Taylor, Linnet (Ed.):
Group privacy. New challenges of data technologies
Cham: Springer International Publishing, 2017 (Philosophical studies series 126)
ISBN: 978-3-319-46606-4 (Print)
ISBN: 978-3-319-46608-8 (Online)
ISBN: 3-319-46606-2
Aufsatz in Buch
Fraunhofer ISI ()
genetics; Genomics; senetic privacy; genetic groups; genetic classes; genetic categories; genetic privacy; group privacy; privacy; data protection law; data protection directive; data protection reform; data protection regulation

Each person shares genetic code with others. Thus, one individual’s genome can reveal information about other individuals. When multiple individuals share aspects of genetic architecture, they form a ‘genetic group’. From a social and legal perspective, two types of genetic group exist: Those which map to social groups – ‘genetic classes’ – and those which are perceived through interrogation of shared genetic code – ‘genetic categories’. Both of these groups may be seen to have legitimate interests affected when data about them are processed. This contribution considers if these interests can be effectively protected by the Data Protection Regulation. The contribution finds that the Regulation explicitly excludes genetic groups only in a relation to a limited number of provisions. Yet, the contribution also finds that the use of the Regulation to protect genetic groups would raise significant technical and substantial problems. In light of these problems, the contribution suggests a way forward based around guidance and ex ante oversight.