基因科技政策制定過程中之風險與責任議題

西元二○○三年四月人類基因圖譜的正式繪制完成，使得科學界對於人類基因素材的結構與功能擁有更廣泛，且更準确的知識，并得以提供醫學界許多精密且更加準确的基因檢測與診斷方法。顯而易見的是，對于此種新基因資訊的目標形式，并帶來更加廣泛且深遠的影響。這其中基因資訊的如何解讀與運用扮演了一個決定性的角色，引發了種種新的義務與權利的置換，并關連到一個所謂國家與個人間「基因風險」與「基因責任」的政策議題，而這個議題的範圍實已超越了政策過程中對所各種風險資訊應是否采取「吸納」或「調節」的態度而已。因此，本文將從對基因科技政策制訂中風險問題的討論出發，探討基因知識與基因科技如何能被決策者運用于個人與社會的治理中、政策訂定時所可能面臨的決策困境、以及國家個人如何共同具體形成「基因責任」的概念範疇。因為這不僅關系到在未來基因資訊是如何產生與被生產、如何流通與被使用，以及如何「被消費」的問題，也關系到個人與社會的認同議題與引導人們往後的日常生活方式，最後并提出目前政策機關可能的因應策略以供參考。

關鍵字

基因科技；風險；基因責任；政策制定；治理

並列摘要

This research tries to investigate the relationship between genetic responsibility, public perception and the policy discourse of risk, and is especially interested in how genetic knowledge and genetic technologies are used in the governance of individuals and society, how medical practices and diagnostic tools do function as policy alternatives. Therefore, this research concentrates on a strategic element in the policy discourse of genetic risk and responsibility. The policy discourse of genetic risk and responsibility relies on the scientific and technological progress in genetics since 1970s, but it also linked to the policy success of neoliberal programs and transformations that increasingly individualize and private the responsibility for social risks. By presenting former research in which genetic information plays a crucial role, we show that the rise of new obligations and the displacement of rights that are brought about by referring a “genetic responsibility”. In addition, these new dimensions of genetic risk and responsibility might undermine guarantied rights and the freedom of choice concerning gene medicine. The policy discourse of genetic risk and responsibility tends to substitute the recourse to rights by establishing imperatives of duty towards oneself and others.