The paper: Genetic data misuse: risk to fundamental human rights in developed economies, published in Legal Issues Journal, explains how fundamental human rights are now under serious threat from misuse of genetic data – the ‘gold mines’ of the 21st century. The paper outlines a number of steps that can be takento minimise harm and increase benefits for all people.
Today we can extract from an individual’s genetic data an unprecedented and growing amount of predictive information.It is not possible to protect privacy in the current genomic and digital era, including due to uniqueness of each person’s genome; de-identification (anonymisation) of genetic data not protecting privacy; information extracted from genomic data having life-long and increasing value; regular global large-scale data sharing; and regular large-scale data breaches.
This affects all people, because genetic data pools are large and growing, with some countries having the genomic data of virtually the entire population; genome sequencing is becoming a routine; and genome sequencing is a prerequisite for benefiting from advancements (e.g. in medicine and education).
Current laws, in jurisdictions with most developed laws in these fields, provide only basic protection for individuals. Data protection and privacy laws are difficult to enforce; and the law does not account for the special characteristics of genetic data. Due to a number of unique characteristics of genetic data, it is practically impossible to assess damages for genetics data breaches.
The paper explains why this threat is particularly imminent in developed economies. Genomic testing is becoming common and genomic medicine is already a reality.
Societies should consolidate the existing scattered legal protection; enact specific laws to regulate existing and anticipated uses of genetic information; and focus on regulating use of information extracted from genetic data instead of protecting genetic data itself, as this is practically impossible.
Justice system professionals need to be equipped with basic knowledge on genetic findings and what these findings mean for justice. Interdisciplinary teams are needed to design effective protection from genetic information misuse.
The paper is authored by Fatos Selita, founder of UKLSA, Head of Institute of Law and Ethics, Tomsk State University (TSU); founding member of TAGC, The Accessible Genetics Consortium; a director of a number of Master’s modules in these areas, including at TSU; and a director of AIR courses at Goldsmiths, University of London, which include, – Genetic Law: Genetics, Law and Ethics; – Psychology for Lawyers: Brain, Mind and Behaviour; – Decision Making: Brain, Mind and Behaviour; – International Business Law in Practice; and – Public Speaking. Fatos Selita is a New York State Attorney and an English Barrister.