Genetic Data and the Law: A Critical Perspective on Privacy Protection
Research using genetic data raises various concerns relating to privacy protection. Many of these concerns can also apply to research that uses other personal data, but not with the same implications for failure. The norms of exclusivity associated with a private life go beyond the current legal concept of personal data to include genetic data that relates to multiple identifiable individuals simultaneously and anonymous data that could be associated with any number of individuals in different, but reasonably foreseeable, contexts. It is the possibilities and implications of association that are significant, and these possibilities can only be assessed if one considers the interpretive potential of data. They are missed if one fixates upon its interpretive pedigree or misunderstands the meaning and significance of identification. This book demonstrates how the public interest in research using genetic data might be reconciled with the public interest in proper privacy protection.
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access to genetic affect anonymisation anonymous data apply Article associated biobanks biological material biological samples Chapter circumstances concept of personal concept of privacy concerned considered context Council of Europe currently data controller Data Protection Directive data protection framework Declaration of Helsinki described distinction European Convention European Union example expectations family members fundamental rights gene genetic architecture genetic data genetic discrimination genetic information genetic privacy genetic testing genome haemochromatosis human genetic Human Genetics Commission Human Rights Ibid idea important informed consent interpretive frameworks interpretive pedigree interpretive potential justified kinds legitimacy LRRTM1 mation Medical Law International multiple data subjects norms of exclusivity particular individual personal data personal information possibility primary data subject privacy interests protect privacy public interest reason recognised regulation relate relevant represents requirement research using genetic responsibilities rights and freedoms risk secondary data subjects significance specific tion transactions