ABSTRACT

The sharing, circulation, distribution, and use of human tissue samples and related data have become a major political and scientific pre-occupation during the past two decades. In the age of big data, the political, scientific, and economic momentum around the need to increasingly collect and collate massive amounts of data has intensified. At the same time, the control and sharing of samples and data have become increasingly strategic in positioning biobanks within the global biomedical research market. Numerous commentators have identified several reasons why and with whom biobanks choose to share. Despite intensified efforts to encourage sharing within networks, there are still actors who have not embraced the values of sharing. The term ‘data hugging' is introduced as a form of data work through which value is generated but sharing as a practice is not exercised according to community expectations. Data hugging is a term used within the biobanking community to describe the practice of withholding samples or data from other network members. While some biobankers consider data hugging to be an impediment to efficient and responsible science, it can also be another way of generating value in an otherwise challenging value creation environment. European biobanking policies, as well as the biobanking community, need a better understanding of these value-generating practices in relation to the life cycle of the biobank.

摘要

在过去的二十年里，人体组织样本和相关数据的共享、流通、分发和使用已成为主要的政治和科学当务之急。在大数据时代，越来越多地收集和整理大量数据的政治、科学和经济动力已经增强。与此同时，样本和数据的控制和共享对于在全球生物医学研究市场中定位生物库变得越来越具有战略意义。许多评论员已经确定了生物样本库选择共享的几个原因以及与谁共享。尽管加大了鼓励网络内共享的力度，但仍有一些参与者没有接受共享的价值观。术语“数据拥抱” 是作为一种数据工作形式引入的，通过它产生价值，但共享作为一种实践并没有根据社区期望进行。数据拥抱是生物样本库社区中使用的一个术语，用于描述从其他网络成员处扣留样本或数据的做法。虽然一些生物银行家认为数据拥抱是高效和负责任的科学的障碍，但它也可能是在其他具有挑战性的价值创造环境中创造价值的另一种方式。欧洲生物样本库政策以及生物样本库社区需要更好地了解这些与生物样本库生命周期相关的价值生成实践。数据拥抱是生物样本库社区中使用的一个术语，用于描述从其他网络成员处扣留样本或数据的做法。虽然一些生物银行家认为数据拥抱是高效和负责任的科学的障碍，但它也可能是在其他具有挑战性的价值创造环境中创造价值的另一种方式。欧洲生物样本库政策以及生物样本库社区需要更好地了解这些与生物样本库生命周期相关的价值生成实践。数据拥抱是生物样本库社区中使用的一个术语，用于描述从其他网络成员处扣留样本或数据的做法。虽然一些生物银行家认为数据拥抱是高效和负责任的科学的障碍，但它也可能是在其他具有挑战性的价值创造环境中创造价值的另一种方式。欧洲生物样本库政策以及生物样本库社区需要更好地了解这些与生物样本库生命周期相关的价值生成实践。