基因科技政策制定過程中之風險與責任議題

Abstract

西元二○○三年四月人類基因圖譜的正式繪製完成，使得科學界對於人類基因素材的結構與功能擁有更廣泛，且更準確的知識，並得以提供醫學界許多精密且更加準確的基因檢測與診斷方法。顯而易見的是，對於此種新基因資訊的應用與評估將超越目前所有醫學診斷、預防與治療所原本期望發展出來的目標形式，並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，並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採取「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於個人與社會的治理中、政策訂定時所可能面臨的決策困境、以及國家與個人如何共同具體形成「基因責任」的概念範疇。因為這不僅關係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，也關係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，最後並提出目前政策機關可能的因應策略以供參考。

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.