The Ethics and Governance of Human Genetic Databases European Perspectives Part 8

Vì vậy, để tạo ra tin tưởng nó là cần thiết để thể hiện thiện chí và thẩm quyền. Kể từ khi sự tin tưởng là một mối quan hệ, sự tương tác, xây dựng lòng tin yêu cầu nói chuyện và suy nghĩ về sự tin tưởng. Hơn nữa, vì tin tưởng liên quan đến việc dễ bị tổn thương và nguy cơ, nó là thích hợp hơn để thảo luận về các rủi ro có thể xảy ra, vì mù quáng tin tưởng là một nền tảng rất không ổn định cho một doanh nghiệp quy mô lớn. | 198 Margit Sutrop Thus to create trust it is necessary to show goodwill and competence. Since trust is a relationship an interaction building trust requires talking and thinking about trust. Furthermore since trust involves vulnerability and risk it is preferable to discuss possible risks since blind trust is a very unstable foundation for a large-scale and long-term enterprise. If we are unaware of potential risks we cannot protect ourselves. Abused public trust will be very difficult to restore. But reflection on possible risks should not lead to irrational mistrust which is a cynical refusal of trust. What we need is authentic trust which is reflective and involves rational choice. Our thinking about trust which involves taking risks will help us to maintain trust and to equip us against possible breaches of trust. 23 Informed consent and human genetic database research Sigurdur Kristinsson and Vilhjdlmur Arnason Introduction Since the Second World War leading documents have espoused voluntary consent as essential to the morality of research involving human subjects. The Nuremberg Code thus begins by declaring that the voluntary consent of the human subject is absolutely essential .1 The Declaration of Helsinki similarly states as one of the basic principles of all medical research that the subjects must be volunteers and informed participants in the research project .2 Over the past fifty years the principle of informed consent has become a cornerstone of institutionalized research ethics and many nations have committed themselves to it through their laws and In recent years the practice of informed consent has been challenged as researchers have gained the power to accumulate and process ever larger amounts of data including genetic data. Is it necessary to obtain informed consent for research on data that has irreversibly been rendered anonymous 4 Is it conceptually possible to give informed consent to participation in unspecified future .

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