The right to personality in (post)-genomic medicine: a new way of thinking for the new frontier

- European Human Rights Law Review
Author/s: -Krajewska, Atina
Journal: European Human Rights Law Review
Year: 2011
Volume: 1
Pages: 54-70
Start Page: 54

Twenty years after the launch of the Human Genome Project advances in genomics and post-genomics that resulted from this research, including DNA collections and direct-to-consumer genetic tests, genome se- quencing, and systems biology are slowly becoming a part of our everyday life.They exacerbate the diffi- culties raised thus far by genetics with regard to privacy, autonomy, dignity and discrimination.At the same time, the concept of “genetic privacy” has failed to provide a solution to many problems arising in this area.Consequently, there is a pressing need for a different normative model towards molecular life sciences genomics.This article claims that instead of genetic privacy a broader perspective could be gained by em- ploying the German notion of the right to personality as a new frame of reference.While far from providing ultimate solutions to particular problems, a right to develop one’s personality offers a much wider, multi- level and flexible conceptual framework that could lead to a more comprehensive and dynamic human rights protection of the individual in the area of genomics and biomedicine in Europe.