Genetic data misuse: risk to fundamental human rights in developed economies

Authors: Fatos Selita Published date: 15-01-2019 Status: Published

The unprecedented and growing amount of predictive information we can draw from an individual’s genetic data poses serious threats to fundamental human rights for a number of reasons. Large-scale whole genome sequencing and data sharing, enabled by technological advancements, are ongoing internationally. The extent of data availability, and genetic data being the ‘gold mines’ of the 21st century, has led to large-scale data breaches being regular and unavoidable. The traditional protective measure – anonymisation of data – is ineffective in preventing re-identification of individuals. Moreover, genetic data are useful for more than a generation. Therefore, once information is extracted from genetic data and is in possession of potential misusers, even the discarding of sequenced genomes does not protect individuals from the numerous potential misuses of genetic information. Protection provided by the law is either non-existent or scattered across a number of legislations even in countries with recently updated laws, with fundamental rights being under threat. This threat is particularly imminent in developed economies, as genomic testing is becoming common and genomic medicine a reality. To protect individuals, societies must enact specific laws to regulate existing and anticipated uses of genetic information.

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