SV / EN

The right to science and human germline editing. Sweden, its external commitments and the ambiguous national responses under the Genetic Integrity Act

Publicerad i Förvaltningsrättslig tidskrift 2019 2, maj 2019 s. 199–222

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The manipulation of human DNA have always elicited strong opinions, especially when conducted in human germline cells. In European regional legal fora, heritable genome modification has been stringently addressed; however, somatic gene therapy has usually had a particular focus on the health-related dimension, leaving other questions outside the scope of the concerned legal instrument. In Sweden, genetic interventions are addressed in the Genetic Integrity Act adopted in 2006, which is before the considerable advances in the field of genetics and genomics. Adopting the right to science framework, this article seeks to examine the challenges associated with the Genetic Integrity Act in regard to human genetic modification, with particular emphasis on gene therapy as regulated under the Genetic Integrity Act. It illuminates challenges that scientific advances poses to the interpretation and applicability of the Genetic Integrity Act in light of the human right to science and sets forward considerations for ways forward. In that way, the contribution not only addresses pressing challenges in the Swedish national law but also contributes to shaping theoretical understanding on the right to science.