生物信息庫研究中個人遺傳信息的告知

Ethical Issues in Informing Biobank Findings to the Individual

Abstract

LANGUAGE NOTE | Document text in Chinese; abstract also in English.

隨著分子和基因組信息對流行病學影的響增加，無數遺傳流行病學研究和後人類基因組計劃的研究都愈來愈依賴人類生物信息庫(biobank)。生物信息庫的建立，不但使慢性病研究獲得了很多突破性的進展，還強而有力的支持了藥物的創新研究和治療方式的改進。再者，隨著後基因組時代的來臨，誕生了以基礎研究所獲得的知識成果，快速轉化為臨床上治療這一新方法，並通過實施這新方法反過來驗證基礎研究中的發現或建立的新理論（轉化醫學）。生物信息庫的建立能促進轉化醫學研究及提高科研效率。所以，生物信息庫成為近年來各國生物醫學領域爭相發展的重點。然而，在基因組研究和後人類基因組計劃的背景下，伴隨它們十幾年發展的是無數待解決的倫理挑戰，其中是否向參與者告知研究結果就是國際倫理學界研究和關注的焦點之一。本文通過對正反觀點的論證，對比總結得出一些粗淺的建議，以期為相關政策的制定者提供一些參考。

The establishment of human biobanks has begun to play an important function in promoting healthcare in many countries. Biobanks can disclose genetic data and can be used to identify health- and disease-relevant environmental, individual, and clinical factors. Indeed, studies of genetic epidemiology and human genomics increasingly rely on the use of human biobanks, which have played a positive role in breakthroughs in chronic disease research. They have also strongly supported creative research on drugs and the improvement of therapeutic methods.

Currently, biobanks are an important target for development within the area of biomedicine. However, at least in the context of genome research, enormous ethical problems and challenges have arisen. Among those problems and challenges is the important issue of information disclosure: should individual donors be informed only of the average research results from all relevant donors, or should they be informed of their own specific genetic information arising from biobank research? The dominant bioethical view seems to imply the latter – that individual donor information should be made available to the individual donor – according to the fashionable bioethical principle of respect for the individual’s autonomy. However, this essay asserts that such disclosure has both positive and negative effects that should be carefully considered and balanced. It argues that individual donors should not have an absolute right to be informed of biobank findings. Rather, public policy regarding the disclosure of biobank findings to individual donors should be formulated based on the comprehensive consideration of relevant factors: the nature and severity of a genetic risk, the validity of the research findings, the clinical utility of the findings, the feasibility of using the findings, and the integrity of the research.

DOWNLOAD HISTORY | This article has been downloaded 29 times in Digital Commons before migrating into this platform.