Epigenetics and the Protection of Personality Rights

Abstract

For some time epigenetics has been a focus of increasing public interest. While the sequencing of the human genome was the paramount event in genetics, epigenetic research is focused on mechanisms which regulate genes and on environmental influences on gene expression. Since the appearance of the debate about genetic engineering, genetic data has been considered particularly relevant for an individual’s personality because of their predictive potential coupled with their general invariability, their influence on reproductive decisions, and the significance for likewise affected relatives. Genetic data could be used to create health or personality profiles. Therefore, the individual has a “right to informational self-determination,” which is part of the right of personality. This allows the individual to decide whether and to which extent third persons or institutions should be granted access to one’s personal data. Because genetic information may cause personal harm, e.g., if they reveal the future onset of an incurable disease, the individual has the right to decide not to know his or her genetic status. This so-called “right not to know” is also part of the right of personality. This paper examines the influence that epigenetic information exerts on the right of personality in comparison to that of genetic information and whether a reassessment of the protection of a person’s genetic data, personality, and privacy is required.