Data storage and DNA banking for biomedical research: technical, social and ethical issues
Data storage and DNA banking for biomedical research: technical, social and ethical issues
复制标题
DOI：
10.1038/sj.ejhg.5201107
复制
发表时间：
2003-12-01
影响因子：
5.2
通讯作者：
Ayme, S
中科院分区：
文献类型：
--
作者：
Ayme, S
在过去的几年里，人类DNA采样和数据收集有了重要的扩展。这项活动对遗传研究、临床护理和未来治疗具有战略重要性。应维护收藏并优化其使用。人类脱氧核糖核酸、组织或细胞收集品和所附数据库已为科学目的广泛交换。然而，这些收集和数据库的地位没有明确界定，大多数机构没有关于这一活动的书面政策或协议。在大多数欧洲国家，有关条例尚处于早期阶段，由于行为者和规范行为者的规则多种多样，情况难以理解。交换和分享信息和材料的规则不明确。将利益返还给研究对象或社区的概念是相当新的。收集和数据库的建立和维护费用昂贵。科学家、工业合作伙伴、卫生保健专业人员以及最终的社区都对它们非常感兴趣。很难将公共研究和私人研究分开，因为这两个部门的研究人员经常参与同一个项目。虽然这有助于有效的技术转让，但也引起了对利益冲突的关切。有必要促进对基于DNA收集的研究的信心。为了从专业角度讨论这些问题并提出建议，欧洲人类遗传学学会（ESHG）的公共和专业政策委员会（PPPC 1）于2000年4月在法国巴黎举办了一次讲习班2，邀请了来自15个欧洲国家的51名专家参加。会议之前，他们收到了公私伙伴关系委员会编写的一份工作文件，会后对该文件进行了修订，以考虑到与会者发表的意见。研讨会结束后，ESHG发表了声明和建议，得到了成员的认可。它们应反映科学界的观点。
Introductory considerations The last few years have witnessed an important expansion of human DNA sampling and data collecting. This activity has strategic importance for genetic research, clinical care and future treatments. Collections should be maintained and their use optimized. Human DNA, tissue or cell collections and the attached databases have been extensively exchanged for scientific purposes. However, the status of such collections and databases is not well defined and most institutions have no written policies or agreements regarding this activity. Regulations are at an early stage in most European countries and, with the multiplicity of actors and of rules that regulate them, the situation is difficult to comprehend. The rules for exchanging and sharing of information and material are not clear. The notion of return of benefits to research subjects or communities is fairly recent. Collections and databases are expensive to establish and maintain. They are of high interest to scientists, to industrial partners, to health care professionals and ultimately for the community. It is difficult to separate public and private research, as researchers from both sectors are often involved in the same project. While this enables effective technology transfer, it also gives rise to concerns about conflicts of interest. There is a need to promote confidence in research based on DNA collections. To discuss these issues and produce recommendations from the professional point of view, the Public andProfessional Policy Committee (PPPC1) of the European Society of Human Genetics (ESHG) organized a workshop2 in April 2000 in Paris, France, to which 51 experts from 15 European countries were invited. Prior to the meeting, they received a working paper developed by the PPPC, which was revised after the meeting to take into account the points of views expressed by the participants. Following the workshop, the ESHG issued statements and recommendations, which were endorsed by the membership. They are expected to reflect the views of the scientific community.