Emerging Ethical Issues for DataLakes

该项目是与创新英国资助的PathLAKE联盟合作的，该联盟正在将计算技术应用于癌症诊断。PATHLAKE是由Innovate UK资助的5个医学成像和数字病理学卓越中心之一。它是大学研究人员、NHS信托基金和商业组织之间的合作伙伴关系。华威大学正在领导PathLAKE的计算部门，与主要合作伙伴大学医院考文垂和沃里克郡NHS信托，皇家飞利浦以及贝尔法斯特，牛津和诺丁汉的教学医院和大学的合作伙伴和专家一起工作，专注于乳腺癌，前列腺癌，肺癌和结肠癌。参与的数字实验室汇集了与目标癌症相关的组织的注释整张幻灯片图像（wsi），并欢迎财团以外的商业数字科学公司使用其数据训练和测试算法。伦理问题是由储存wsi“数据库”所涉及的内容引起的。例如，原始组织来自哪里，如果有的话，在什么知情同意制度下？这些问题说明了数据伦理、组织伦理和一般研究伦理在医学图像研究和发展中的交叉点。从数据湖中提取数据，特别是导致使用在Pathlake wsi上训练和测试的算法开发营利性应用程序的情况，进一步引发了公私合作伙伴关系的道德问题，特别是NHSX为数据驱动研究开发的代码所预期的问题。当从参与NHS信托基金的组织捐赠者返回算法的临床效益时，湖中的数据是否真正匿名或去识别可能取决于（选择性和暂时的）去识别，这也存在伦理和概念问题。由于个人数据的概念与身份的可推断性联系在一起，并且由于计算病理学中涉及的超级计算能力可能允许远远超出人类能力的非常微妙的推断，因此WSI数据是否属于个人数据远非显而易见。该项目将绘制所有这些问题的地图并进行初步讨论，研究结果将分发给卓越中心、创新英国、英国政府人工智能办公室、信息专员办公室和NHS研究伦理委员会。

The proposed project is a partnership with the Innovate UK-funded PathLAKE Consortium, which is applying computational techniques to cancer diagnostics. PATHLAKE is one of 5 Centres of Excellence in medical imaging and digital pathology funded by Innovate UK. It is a partnership between university researchers, NHS trusts and commercial organizations. The University of Warwick is leading the computational arm of PathLAKE, working together with partners and experts at the lead partner University Hospitals Coventry and Warwickshire NHS Trust, Royal Philips and teaching hospitals and universities at Belfast, Oxford and Nottingham, focussing on breast, prostate, lung and colon cancers. The digital labs involved have pooled annotated whole slide images (WSIs) of tissue relevant to the targeted cancers and have welcomed applications from commercial digital science companies outside the consortium to train and test algorithms with its data. Ethical issues are raised by what is involved in stocking the "datalake" of WSIs. For example, where does the original tissue come from and under what informed consent regime if any? These issues illustrate the intersection in medical imagery research and development of data ethics, tissue ethics and general research ethics. Extracting data from the data-lake, especially where it leads to the development of for-profit apps using algorithms trained and tested on Pathlake WSIs, raises further issues in the ethics of public-private partnerships, specifically those anticipated by Codes developed for data-driven research by NHSX. There are also ethical and conceptual issues connected with whether data in the lake are truly anonymised or de-identified when returning clinical benefit from algorithms to tissue donors from the participating NHS trusts may depend on (selective and temporary) de-identification. Since the concept of personal data is tied to the inferability of identity, and since super computing power involved in computational pathology may allow for very subtle inferences far beyond human capacities, it is far from obvious whether WSI data is personal or not. A mapping and preliminary discussion of all of these issues will result from the project, and findings will be distributed to the Centres of Excellence, Innovate UK, and the UK Government Office for AI, as well as the Office of the Information Commissioner, and NHS Research Ethics Committees.