初探基因資訊知悉權和拒絕知悉權暨相關法律問題之研究──以德國法為借鏡

The Right to Know and Not to Know One's Own Genetic Information and the Related Legal Issues Thereof －An Exploratory Study with Reference to German Law

隨著基因科技的發展，透過如預測性質的基因檢測來一窺個人將來罹患某些疾病之風險，已非天方夜譚，這使得進行基因檢測之當事人有機會採取相應對策，以避免或降低日後疾病確實發生之苦痛。但從另一方面來說，決定知悉或拒絕知悉自身的基因資訊，對於個人自我同一性的形塑、人生計畫之安排等，亦具有相當程度之影響，從而在法律層面上探討基因資訊知悉權、拒絕知悉權之存否及其論據，應有其實益。其次，在涉及遺傳疾病之情況下，基因資訊往往與當事人有血緣連結之家族成員的健康具密切關聯。因此，家族成員若亦得選擇是否知悉此類訊息，自同具有一定的實質意義。有鑑於此，本文以德國法為借鏡，依序析論當事人、其家族成員與基因資訊知悉權、拒絕知悉權交錯互動下所產生的利益衝突及其中可能的平衡點，另亦觸及相關的民事法律問題。

As genetic technology advances, it is now possible to assess a subject’s risk of suffering a specific disease or diseases through a predictive genetic test. Based on the test result, it would be possible for the subject to take appropriate measures to prevent or reduce future suffering caused by certain diseases. On the other hand, the decision to know or not know one’s own genetic information has a considerable degree of influence on personal identity and life plan. Therefore, it is worth to examine at legal level the existence/nonexistence of the right (not) to know one’s own genetic information and the reasoning behind it. In addition, in the context of hereditary disease, the subject’s genetic information is very likely to be relevant to the health conditions of the blood relatives of the subject. It is thus important for the family members to decide whether or not to receive this information. In light of the above, the present study referenced German law to analyze the conflict of interest and the possible balance point between the interactions among the subject, the family members of the subject, and their right to know and not to know. This study also covers the related legal issues of civil liability.