• ISSN: 2516-1210 (Print);
  • ISSN: 2515-9887 (Online)

OPEN ACCESS PAPERS

Archives (2018-22)

 

ORIGINAL ARTICLES


 

Article | Published 30 September 2022

 

Designing Post-Genomic Future Together: Brief communication in response to the publication of the UK Government report “Genomics Beyond Healthcare”

Robert Chapman, Yulia Kovas, Fatos Selita*

Legal Issues Journal, Volume 9, Issue 1, Jan-Jul 2022

*Corresponding author: Fatos Selita, Fatos.Selita@gold.ac.uk.

View abstract

Abstract. This publication is a brief communication in response to the UK government report: “Genomics Beyond Healthcare”, which was released on January 26, 2022. We discuss some of the key areas covered by the report, as well as other recent research; and call for interdisciplinary and international collaborations.

Article | Published 15 January 2019

 

Genetic Data Misuse: Risk to Fundamental Human Rights in Developed Economies

Fatos Selita*

Legal Issues Journal, Volume 7, Issue 1, Jan-Jul 2019

*Corresponding author: Fatos Selita, Fatos.Selita@gold.ac.uk.

View abstract

Abstract. 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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