Genetic Privacy in Europe

Helen Wallace

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Genetic Privacy in Europe

机译：欧洲的遗传隐私

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Genetic privacy in Europe is under threat as commercial companies seek to access electronic medical records held in national healthcare systems and to combine this data with individuals' whole genomes, all without their knowledge or consent. The aim is to make personalised risk assessments which can be used to market medicines and other products directly to consumers, vastly expanding the healthcare market. Policymakers are being lobbied to subsidize construction of these databases with taxpayers' money as a public-private partnership. Lobbyists aim to seek consent only after the databases have been built and the risk assessments have been calculated, at the point of feedback of these assessments to the individual. Because genomes act as biometrics - linking online data to an individual's physical person - other data will be connected to this system in the future, including government data (such as a person's use of social services and their education records) and online data such as search histories and social media. If these databases go ahead, it will also be possible to identify a persons genetic relatives and their heath and other data.

机译：随着商业公司试图访问国家医疗保健系统中保存的电子医疗记录并将这些数据与个人的整个基因组结合在一起，而没有他们的知情或同意，欧洲的遗传隐私受到了威胁。目的是进行个性化的风险评估，该评估可用于直接向消费者销售药品和其他产品，从而极大地扩展了医疗保健市场。决策者被游说用纳税人的钱作为公私合作伙伴关系来补贴这些数据库的建设。游说者的目标是仅在建立数据库并计算风险评估之后，才向这些个人反馈这些评估点。由于基因组充当生物识别技术-将在线数据链接到个人的自然人-将来其他数据将连接到该系统，包括政府数据（例如某人对社会服务的使用及其教育记录）和在线数据（例如搜索）历史和社交媒体。如果这些数据库继续进行，还将有可能确定一个人的遗传亲戚及其健康状况和其他数据。

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《Genewatch :》 |2014年第1期|共3页
作者
Helen Wallace;
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正文语种 eng
中图分类遗传学;
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专利

1. Genetic Privacy in Europe [J] . Helen Wallace Genewatch : . 2014,第1期

机译：欧洲的遗传隐私
2. The Genetic Privacy Carousel: A Discourse on Proposed Genetic Privacy Bills and the Co-Evolution of Law and Science [J] . Edward S. Dove Current pharmacogenomics and personalized medicine . 2011,第4期

机译：基因隐私轮播：讨论拟议的基因隐私法案以及法律与科学的共同发展
3. Current issues in medically assisted reproduction and genetics in Europe: research, clinical practice, ethics, legal issues and policy. European Society of Human Genetics and European Society of Human Reproduction and Embryology. [J] . Joyce C Harper, Joep Geraedts, Pascal Borry, European journal of human genetics: EJHG . 2013,第Suppla2期

机译：欧洲医学辅助生殖和遗传学的当前问题：研究，临床实践，伦理，法律问题和政策。欧洲人类遗传学会和欧洲人类生殖与胚胎学会。
4. PRIVACY REGUALTIONS IN THE UNITED STATES, WESTERN EUROPE AND EASTERN EUROPE [C] . Dorothee-Catherine Wengelnik, Vivek Shah, Jim Keefe Decision Sciences Institute annual meeting . 2012

机译：美国，西欧和东欧的隐私法规
5. Reconciling the European and American Approaches to Privacy Law: A Historical and Legal Analysis of Privacy Law and Data Communications Technology in the United States and Europe, 1970-2018 [D] . Zivkovic, Lisa V. 2018

机译：调和隐私法的欧洲和美国方法：1970 - 2018年美国和欧洲隐私法和数据通信技术的历史和法律分析
6. Abstracts from the 51st European Society of Human Genetics (ESHG) Conference in conjunction with the European Meeting on Psychosocial Aspects of Genetics (EMPAG) [O] . 2019

机译：51欧洲人遗传学学会（ESHG）会议的摘要与欧洲会议关于遗传学的心理社会（EMPAG）
7. Commission Communication on the protection of individuals in relation to the processing of personal data in the Community and information security. Proposal for a Council Directive concerning the protection of individuals in relation to the processing of personal data. Draft Resolution of the Representatives of the Governments of the Member States of the European Communities meeting within the Council. Commission Declaration on the application to the institutions and other bodies of the European Communities of the principles contained in the Council Directive concerning the protection of individuals in relation to the processing of personal data. Proposal for a Council Directive concerning the protection of personal data and privacy in the context of public digital telecommunications networks, in particular the integrated services digital network (ISDN) and public digital mobile networks. Recommendation of a Council Decision on the opening of negotiations with a view to the sccession of the European Communities to the Council of Europe Convention for the protection of individuals with regard to the automatic processing of personal data. Proposal for a Council Decision in the field of information security. COM (90) 314 final, 13 September 1990 [O] . 1990

机译：委员会关于保护个人在社区中处理个人数据和信息安全的沟通。关于保护与个人数据处理有关的个人的理事会指令的提案。欧洲共同体成员国政府代表在理事会内举行会议的决议草案。委员会关于向欧洲共同体机构和其他机构申请的关于保护个人数据处理方面的理事会指令所载原则的声明。关于在公共数字电信网络，特别是综合业务数字网（IsDN）和公共数字移动网络中保护个人数据和隐私的理事会指令的提案。建议理事会关于开放谈判的决定，以期欧洲共同体对欧洲委员会的让步，以保护个人自动处理个人数据。关于理事会在信息安全领域的决定的提案。 COm（90）314决赛，1990年9月13日

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