The interplay of ethics and genetic technologies in balancing the social valuation of the human genome in UNESCO declarations

Hristina Gaydarska; Kayo Takashima; Shibly Shahrier; Aviad Raz; Jusaku Minari

doi:10.1038/s41431-024-01549-3

The interplay of ethics and genetic technologies in balancing the social valuation of the human genome in UNESCO declarations

Eur J Hum Genet. 2024 Feb 15. doi: 10.1038/s41431-024-01549-3. Online ahead of print.

Authors

Hristina Gaydarska¹, Kayo Takashima¹, Shibly Shahrier², Aviad Raz^#³, Jusaku Minari^#⁴

Affiliations

¹ Uehiro Research Division for iPS Cell Ethics, Center for iPS Cell Research and Application (CiRA), Kyoto University, Kyoto, Japan.
² Teesside University International Business School, Teesside University, Tees Valley, UK.
³ Department of Sociology and Anthropology, Ben-Gurion University of the Negev, Beersheba, Israel. aviadraz@bgu.ac.il.
⁴ Uehiro Research Division for iPS Cell Ethics, Center for iPS Cell Research and Application (CiRA), Kyoto University, Kyoto, Japan. jusaku.minari@cira.kyoto-u.ac.jp.

^# Contributed equally.

PMID: 38355962
DOI: 10.1038/s41431-024-01549-3

Abstract

This study investigates changes in the social valuation of the human genome over the more than 30 years since the establishment of the Human Genome Project. It offers a descriptive sociological analysis of the three waves of this valuation, mainly by considering three key UNESCO declarations and a relevant report. These waves represent a shifting balance between collectivism and individualism, starting with a broadly constructed valuation of the human genome as common human heritage and moving toward a valuation of dynamic applications within various social and medical contexts (e.g., personalized genomic medicine and genome editing). We seek to broaden the analytical perspective by examining how the declarations' ethical foci are framed within the context of rapidly evolving genetic technologies and their social applications. We conclude by discussing continuity and change in value balancing vis-à-vis changing genomic technologies.