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The Ethics and Governance of Human Genetic Databases European Perspectives Part 2

Có quyết định nhất định được, vì vậy để nói chuyện, chỉ có chúng ta để làm cho. Một số người trong số họ liên quan đến cơ thể chúng ta, những người khác đạt được và công bố thông tin về bản thân. Xác định các lĩnh vực riêng tư decisional của chúng tôi. | 18 Matti Hayry and Tuija Takala There are certain decisions which are so to speak only ours to make. Some of them concern our bodies others the attainment and disclosure of information about ourselves. These define the domain of our decisional privacy. Respect for this can imply for instance that we have a right to choose what happens in and to our bodies as some people have claimed in the abortion debate. Decisions concerning personal data are intrinsically related to the informational aspect of our privacy. Consent Permission to seek store and disseminate genetic information about individuals can be obtained in many ways. The standard approaches in the biomedical context are based on the notions of actual implied hypothetical and proxy consent. Actual consent is the real genuine permission of the individuals themselves to collect store and disseminate their tissue samples or genetic data. In medical contexts consent is as a rule considered valid only if three conditions are met. The individual consenting must be competent not permanently or temporarily unable to make reasonably clear-headed decisions for herself. The consent must be given freely not as a result of coercion intimidation or pressure. And the individual must be informed as to what exactly she consents to and what the implications of the decision for her will or can be. Implied consent also known as presumed consent is the notion evoked in cases where individuals have not actually consented or dissented to the procedure in question but others claim that their permission can nevertheless be assumed. The claim can be backed up by various strategies. One is to point out that a genuine opportunity to register dissent has been given to individuals but they have chosen not to use it. Another is to appeal to related evidence which gives indirect support to the assumption perhaps by showing that the same people have not in the past dissented to similar practices in other fields.6 Hypothetical consent or .