吉田 幸恵

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.

日本の状況に合わせた遺伝情報を含めた医療情報の利活用を支える法的・社会的基盤を整備するためには、まず医療情報の利活用先進国における、それらに関連する政策動向を明らかにすることが重要である。本研究では、がんゲノム医療との関連を見据えつつ、医療情報の利活用が進むフィンランドを参考として、日本で検討すべき課題を抽出し、今後の方針を検討することを目的として現地調査を行った。中でも、ゲノム法や社会健康情報の二次利用に関する法制定準備、FinnGenプロジェクトなどが注目すべき事項であった。日本への示唆として、既存の研究基盤の再活用、医療情報の二次利用を適正化するためのバイオバンク同意の積極的な活用と法的裏付けの検討、医療と研究の試料・情報を結び付けるID制度の仕組みなどが挙げられた。今後、がんゲノム医療の実装が進められている米国の状況なども調査し、日本のがんゲノム医療に資する法的・社会的基盤を検討していく必要がある。(著者抄録)