Weisbrot David
Australian Law Reform Commission, Australia.
New Genet Soc. 2003 Apr;22(1):89-113. doi: 10.1080/1463677032000069727.
The Australian Law Reform Commission (ALRC) and the Australian Health Ethics Committee are currently engaged in an inquiry into the Protection of Human Genetic Information. In particular, the Attorney-General and the Minister for Health and Ageing have asked us to focus, in relation to human genetic information and tissue samples, on how best to ensure world's best practice in relation to: privacy protection; protection against unlawful discrimination; and the maintenance of high ethical standards in medical research and clinical practice. While initial concerns and controversies have related mainly to aspects of medical research (e.g. consent; re-use of samples) and access to private insurance coverage, relevant issues arise in a wide variety of contexts, including: employment; medical practice; tissue banks and genetic databases; health administration; superannuation; access to government services (e.g. schools, nursing homes); law enforcement; and use by government authorities (e.g. for immigration purposes) or other bodies (e.g. by sports associations). Under the Australian federal system, it is also the case that laws and practices may vary across states and territories. For example, neonatal genetic testing is standard, but storage and retention policies for the resulting 'Guthrie cards' differ markedly. Similarly, some states have developed highly linked health information systems (e.g. incorporating hospitals, doctors' offices and public records), while others discourage such linkages owing to concerns about privacy. The challenge for Australia is to develop policies, standards and practices that promote the intelligent use of genetic information, while providing a level of security with which the community feels comfortable. The inquiry is presently reviewing the adequacy of existing laws and regulatory mechanisms, but recognizes that it will be even more important to develop a broad mix of strategies, such as community and professional education, and the development of official standards and industry codes that reflect emerging international best practice in the area.
澳大利亚法律改革委员会（ALRC）和澳大利亚健康伦理委员会目前正在对人类遗传信息的保护展开调查。特别是，总检察长以及卫生与老龄事务部长要求我们在人类遗传信息和组织样本方面，重点关注如何才能在以下方面确保达到世界最佳实践：隐私保护；防止非法歧视；以及在医学研究和临床实践中维持较高的伦理标准。虽然最初的担忧和争议主要涉及医学研究的各个方面（例如同意；样本的再利用）以及获得私人保险覆盖范围，但相关问题在多种背景下都会出现，包括：就业；医疗实践；组织库和基因数据库；卫生管理；退休金；获得政府服务（例如学校、养老院）；执法；以及政府当局（例如用于移民目的）或其他机构（例如体育协会）的使用。在澳大利亚联邦体制下，各州和领地的法律及做法也可能存在差异。例如，新生儿基因检测是标准做法，但对于由此产生的“格思里卡片”的存储和保留政策却有显著不同。同样，一些州已经开发了高度关联的健康信息系统（例如整合了医院、医生办公室和公共记录），而其他州则因担心隐私问题而不鼓励这种关联。澳大利亚面临的挑战是制定政策、标准和做法，以促进对遗传信息的明智利用，同时提供一个让社会感到安心的安全水平。此次调查目前正在审查现有法律和监管机制的充分性，但认识到制定一系列广泛的策略更为重要，例如社区和专业教育，以及制定反映该领域新兴国际最佳实践的官方标准和行业规范。
