Is legislation to prevent genetic discrimination necessary in Japan? An overview of the current policies and public attitudes

Abstract

Genetic discrimination (GD) has not been discussed in East Asia as extensively as in Europe and North America. Influenced by UNESCO’s universal declaration in 1997, the Japanese government took a stringent approach toward GD by releasing the Basic Principles on Human Genome Research in 2000. However, Japanese society has mostly been ignoring the prevention of GD for decades, and the principle of prohibiting GD was never adhered to in any of the Japanese laws. We conducted anonymous surveys among the general adult population in 2017 and 2022 to explore their experiences of GD and attitudes toward laws carrying penalties to prevent GD in Japan. In both years, approximately 3% of the respondents had experienced some unfavorable treatment regarding their genetic information. They showed higher recognition of the benefits of using genetic information and lower recognition of concerns about using genetic information and GD in 2022 than in 2017. However, the awareness regarding the need for legislation with penalties on GD had increased over the five-year period. In 2022, the framework of a bill to promote genomic medicine and prevent GD without any relevant penalties was released by the Bipartisan Diet Members Caucus. Considering that the absence of regulations may be a barrier to obtaining genomic medicine, as the initial step toward making the prohibition of GD more effective, legislation that no form of GD will be tolerated may stimulate education and awareness regarding respect for the human genome and its diversity.

A conceptual analysis of public opinion regarding genome research in Japan

“…Six of the eight surveys included a certain aspect of GF ( Middleton et al, 2020 ) and GL as components of awareness ( Ikeda, 2008 ; Ishiyama et al, 2008 ; Hishiyama et al, 2019 ; Ri et al, 2022 ; Muto et al, 2023 ). Regarding GF, Middleton et al (2020) reported that 88% of Japanese respondents answered not familiar with DNA, genetics, or genomics .…”

“…Three of the eight surveys ( Ikeda, 2008 ; Hishiyama et al, 2019 ; Muto et al, 2023 ) touched on aspects of the rules of GR—namely, the existence of regulations, recognition of the content of the regulations, and perceptions of genomic information in the regulations.…”

“…Related to this discussion, one paper reported that the necessity for legal regulations with penalties had increased from 2017 to 2022 ( Muto et al, 2023 ) and that a new bill covering the prevention of genomic discrimination had recently been enacted. With regard to the handling of genetic information, Hishiyama et al (2019) reported that 44% of respondents answered that GR should be implemented under stricter regulations than ordinary research, while 19% responded that GR should be implemented under the same regulations as ordinary research.…”

“…Five out of eight surveys explored awareness of social benefits and concerns ( Ikeda, 2008 ; Kobayashi and Satoh, 2009 ; Hishiyama et al, 2019 ; Ri et al, 2022 ; Muto et al, 2023 ). Regarding social benefits, in four papers, 38%–85% of the Japanese public perceived the usefulness of GR positively.…”

“…Past studies associated with healthy individuals who directly benefited from donations and with patients or participants in a particular project were excluded from the primary focus of this paper. In this study, we identify and analyze eight key Japanese papers related to GR ( Ikeda, 2008 ; Ishiyama et al, 2008 ; Kobayashi and Satoh, 2009 ; Okita et al, 2018 ; Hishiyama et al, 2019 ; Middleton et al, 2020 ; Ri et al, 2022 ; Muto et al, 2023 ). To address the diversities of past Japanese studies on GR, this paper adopts a new theoretical approach—the conceptual framework of cultural transmission.…”