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How Sensitive Is Genetic Data?

机译：遗传数据有多敏感？

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The rising demand to use genetic data for research goes hand in hand with an increased awareness of privacy issues related to its use. Using human genetic data in a legally compliant way requires an examination of the legal basis as well as an assessment of potential disclosure risks. Focusing on the relevant legal framework in the European Union, we discuss open questions and uncertainties around the handling of genetic data in research, which can result in the introduction of unnecessary hurdles for data sharing. First, we discuss defining features and relative disclosure risks of some DNA-related biomarkers, distinguishing between the risk for disclosure of (1) the identity of an individual, (2) information about an individual's health and behavior, including previously unknown phenotypes, and (3) information about an individual's blood relatives. Second, we discuss the European legal framework applicable to the use of DNA-related biomarkers in research, the implications of including both inherited and acquired traits in the legal definition, as well as the issue of “genetic exceptionalism”—the notion that genetic information has inherent characteristics that require different considerations than other health and medical information. Finally, by mapping the legal to specific technical definitions, we draw some initial conclusions concerning how sensitive different types of “genetic data” may actually be. We argue that whole genome sequences may justifiably be considered “exceptional” and require special protection, whereas other genetic data that do not fulfill the same criteria should be treated in a similar manner to other clinical data. This kind of differentiation should be reflected by the law and/or other governance frameworks as well as agreed Codes of Conduct when using the term “genetic data.”
机译：利用遗传数据进行研究的需求上升，随着与其使用相关的隐私问题的认识，提高了意识。以法律规划的方式使用人类遗传数据需要审查法律依据，以及对潜在披露风险的评估。专注于欧洲联盟的相关法律框架，我们讨论了处理研究中的遗传数据的开放问题和不确定性，这可能导致引入数据共享的不必要的障碍。首先，我们讨论一些DNA相关的生物标志物的定义特征和相关披露风险，区分（1）个人的身份的风险，（2）有关个人健康和行为的信息，包括以前未知的表型，以及（3）有关个人血液亲属的信息。其次，我们讨论了适用于使用DNA相关的生物标志物的欧洲法律框架在研究中，包括在法律定义中的遗传和获得性状的影响，以及“遗传异教徒” - 遗传信息的概念具有不同考虑因素的固有特征，而不是其他健康和医疗信息。最后，通过对特定的技术定义进行映射，我们提出了一些关于不同类型的“遗传数据”的敏感性的最初结论。我们认为整个基因组序列可以合理被认为是“特殊的”并且需要特殊的保护，而不满足相同标准的其他遗传数据应该以类似的方式对其他临床数据处理。当使用术语“遗传数据”时，法律和/或其他治理框架以及商定行为守则应反映这种分化。

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