Genetic discrimination in workplace, insurance industry and legal system: A review

Abstract

Introduction

Unfair treatment of a person based on specific genetic characteristics is generally called genetic discrimination (GD). GD is a large-scale issue, as it is commonly perceived as such in many different contexts (e.g., work environment, insurance industry, legal system). Many entities that are often not directly connected to healthcare have lawful access to large amounts of genetic information, and the individual right to control access to and use of them or even to request their erasure must be balanced with other public and private interests. Given the complexity of the issue, in this paper we review the main regulatory and medico-legal aspects connected to GD, with specific regard to the main contexts where it is present.

Materials and methods

Two independent reviewers (SG and AC) conducted a narrative review using PubMed, Google Scholar, and the Genetic Discrimination Observatory (GDO). Boolean search combined “genetic information” AND “genetic discrimination” with (“regulation” OR “law” OR “insurance” OR “right to be forgotten” OR “right to erasure” OR “employment” OR “workplace” OR “justice system” OR “antisocial behavior”). Inclusion criteria comprised: (1) full-text articles available in English; (2) publications between January 1, 2001, and December 31, 2025; (3) studies addressing GD or relevant legal frameworks. Exclusion criteria comprised duplicate records, studies not primarily focused on GD, irrelevant publications, unavailable full texts, and non-English articles. G7 countries were prioritized.

Results

the results of our review were divided into different paragraphs, following the main aspects/contexts of GD: national and supranational regulations against GD; right to be forgotten; GD in the insurance industry; GD in the workplace; GD in criminal justice.

Discussion and conclusions

Our review showed a significant international variability in addressing this issue, with legal approaches that vary from relatively static to highly dynamic. Some hot topics, like right to be forgotten, are inadequately or not addressed in most countries, with individual rights in specific contexts that struggle to be regulated. While in insurance industry variable trade-offs between individual and industry interests have been proposed, concerns about GD in workplaces and legal system (with specific reference to behavioral genetics) require a strict and codified regulation and a sound scientific basis to justify lawful and ethical use of genetic information in these contexts. Indeed, in these contexts, unforeseen negative consequences (different from the intended use) for the person who freely gave access to his/her genetic data represent the main hazard. These consequences tend to mainly concern the same economic/social minorities that are already exposed to a high risk of unequal social/employment/legal treatment.